untitled h1
23 appendix h blgsp follow-up

Instructions: The Clinical Data needed to complete this Follow-up Form should be collected for each qualified case in the Burkitt Lymphoma Genome Sequencing Project (BLGSP) at 12 and 24 months after the date of patient consent. The Tissue Source Site (TSS) should complete this Follow-up Form within 60 days after the 12 and 24 month patient consent anniversary for all qualified cases indicated by the Office of Cancer Genomics (OCG). *Questions regarding this form* should be sent to Nationwide Children's Hospital *or OCG.*
Please note the following definitions for the "Unknown" and "Not Evaluated" answer options on this form.  
Unknown: This answer option should only be selected if the TSS does not know this information after all efforts to obtain the data have been exhausted. If this answer option is selected for a question that is part of the BLGSP required data set, the TSS must complete a discrepancy note providing a reason why the answer is unknown.  
Not Evaluated: This answer option should only be selected by the TSS if it is known that the information being requested cannot be obtained. This could be because the test in question was never performed on the patient or the TSS knows that the information requested was never disclosed.  
Tissue Source Site (TSS): ________________________TSS Identifier: ____________ TSS Unique Patient Identifier: _________ Completed By (Interviewer *Name in OpenClinica)*: __________________________________________Completed Date: ___________________________________  
| #                                                                                      | Data Element                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                             | Entry Alternatives                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                    | Working Instructions                                                                                                                                                                                                                                                                            |                                                                                                                                                                                                                                                               |
|----------------------------------------------------------------------------------------|--------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------|-----------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------|-------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------|---------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------|
| Patient Information Survival Information                                               | Indicate whether the patient was living or deceased at  the date of last contact, or has been lost to follow-up  as defined by the ACoS Commission on Cancer. This  only includes cases where updated follow-up  information has not been collected within the past 15  months and all efforts to contact the patient have  been exhausted (this includes reviewing death  records). If the patient is lost to follow-up, the  remaining questions can be left unanswered. If the patient is deceased and a BLGSP follow-up  form has not yet been completed, the remaining  applicable questions should be completed. 5 |                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                       |                                                                                                                                                                                                                                                                                                 |                                                                                                                                                                                                                                                               |
| Patient Vital  Status                                                                  |                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                          |                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                       |                                                                                                                                                                                                                                                                                                 |                                                                                                                                                                                                                                                               |
| *1                                                                                     | (at date of last  contact)                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                               |  Alive  Dead  Lost to follow-up                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                    | If the patient is living, provide the date of last contact  with the patient (as reported by the patient, medical  provider, family member, or caregiver).  2897020 (month), 2897022 (day), 2897024 (year) Do not answer if patient is deceased. Note: The day of Last Contact is not required. |                                                                                                                                                                                                                                                               |
| *2                                                                                     | Date of Last                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                             | ____ ____ /                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                           | ____ ____ /                                                                                                                                                                                                                                                                                     | ___ ___ ___ ___                                                                                                                                                                                                                                               |
| Contact                                                                                | (month)                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                  | (day)                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                 | (year)                                                                                                                                                                                                                                                                                          | Indicate the last date the patient was known to be  alive, regardless of whether the patient, medical  provider, family member or caregiver was contacted. 2975722 (month), 2975724 (day), 2975726  (year) Note: The day of Last Known Alive is not required. |
| *3                                                                                     | Date Last                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                | ____ ____ /                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                           | ____ ____ /                                                                                                                                                                                                                                                                                     | ___ ___ ___ ____                                                                                                                                                                                                                                              |
| Known Alive                                                                            | (month)                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                  | (day)                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                 | (year)                                                                                                                                                                                                                                                                                          | If the patient is deceased, provide the date of death.  2897026, (month) 2897028 (day), 2897030 (year) Note: The day of Death is not required.                                                                                                                |
| Patient Status (Regarding Submitted Tumor)                                             | _____ _____                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                              |                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                       |                                                                                                                                                                                                                                                                                                 |                                                                                                                                                                                                                                                               |
| *4                                                                                     | Date of Death                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                            | _____ _____ /                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                         | _____ _____ /                                                                                                                                                                                                                                                                                   | _____ _____                                                                                                                                                                                                                                                   |
| (month)                                                                                | (day)                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                    | (year)                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                | Indicate whether the patient was tumor/disease free  (i.e. free of the malignancy that yielded the sample  submitted for the BLGSP study) at the date of last  contact or death.  2759550                                                                                                       |                                                                                                                                                                                                                                                               |
| Tumor Status                                                                           |                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                          |                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                       |                                                                                                                                                                                                                                                                                                 |                                                                                                                                                                                                                                                               |
| *5                                                                                     | (at time of last  contact)                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                               |  Tumor free  With tumor  Unknown tumor status  0: Fully active, able to carry on all pre-disease  performance without restriction.   1: Restricted in physically strenuous activity but  ambulatory and able to carry out work of a light or  sedentary nature, e.g., light housework, office work.  2: Ambulatory and capable of all selfcare but unable to  carry out any work activities. Up and about more than  50% of waking hours.  3: Capable of only limited selfcare, confined to bed or  chair more than 50% of waking hours.   4: Completely disabled. Cannot carry on any selfcare.  Totally confined to bed or chair.  Unknown  Not Evaluated | Provide the Eastern Cooperative Oncology Group  (ECOG) performance status of the patient at the time  selected in the "timing" question below. 88                                                                                                                                               |                                                                                                                                                                                                                                                               |
| Performance  Status: Eastern  Cooperative  Oncology  Group  (at time of last  contact) |                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                          |                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                       |                                                                                                                                                                                                                                                                                                 |                                                                                                                                                                                                                                                               |
| 6                                                                                      |  100: Normal, no complaints, no evidence of disease  90: Able to carry on normal activity; minor signs or  symptoms of disease  80: Normal activity with effort; some signs or symptoms  of disease  70: Cares for self, unable to carry on normal activity or to  do active work  60: Requires occasional assistance, but is able to care for  most of his/her needs.  50: Requires considerable assistance and frequent medical  care  40: Disabled, requires special care and assistance Provide the Karnofsky score for the patient at the  time selected in the "timing" question below. 2003853             |                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                       |                                                                                                                                                                                                                                                                                                 |                                                                                                                                                                                                                                                               |
| Performance  Status:  Karnofsky  Score (at time of last  contact)                      |                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                          |                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                       |                                                                                                                                                                                                                                                                                                 |                                                                                                                                                                                                                                                               |
| 7                                                                                      |                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                          |                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                       |                                                                                                                                                                                                                                                                                                 |                                                                                                                                                                                                                                                               |  
| #                                                                                                                                                                                                                                 | Data Element                                                                                                                                                                                    | Entry Alternatives                                                                                                        | Working Instructions                                                                             |
|-----------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------|-------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------|---------------------------------------------------------------------------------------------------------------------------|--------------------------------------------------------------------------------------------------|
|  30: Severely disabled, hospitalization indicated. Death not  imminent.  20: Very sick, hospitalization indicated. Death not  imminent.  10: Moribund, fatal processes progressing rapidly  0: Dead  Unknown  Not Evaluated |                                                                                                                                                                                                 |                                                                                                                           |                                                                                                  |
| Measure of  Success of  Outcome at the  Completion of  this Follow-up  Submission (at time of last  contact)                                                                                                                      | Text term to describe the overall outcome of  treatment up to the point of the current data  submission. 3104050                                                                                |                                                                                                                           |                                                                                                  |
|  Complete Remission/Response  Partial Remission/Response   Stable disease  Progressive disease  Persistent disease  Unknown                                                                                                 |                                                                                                                                                                                                 |                                                                                                                           |                                                                                                  |
| *8 HIV Status                                                                                                                                                                                                                     |  Positive                                                                                                                                                                                      |                                                                                                                           |                                                                                                  |
| *9                                                                                                                                                                                                                                | HIV antibody                                                                                                                                                                                    |  Negative                                                                                                                |                                                                                                  |
| status                                                                                                                                                                                                                            |  Unknown                                                                                                                                                                                       | Indicate whether the patient is HIV positive. 2180464 Provide the date the patient was diagnosed with HIV.                |                                                                                                  |
| Date of HIV                                                                                                                                                                                                                       | 3579640 (month), 3579644 (day), 3579643                                                                                                                                                         |                                                                                                                           |                                                                                                  |
| 10                                                                                                                                                                                                                                | Diagnosis (if                                                                                                                                                                                   | __ __ / __ __ / __ __ __ __                                                                                               | (year)                                                                                           |
| known)                                                                                                                                                                                                                            | Note: The day of HIV Diagnosis is not required. Provide the patient's Nadir CD4 counts, which are                                                                                               |                                                                                                                           |                                                                                                  |
| 11                                                                                                                                                                                                                                | Nadir CD4  Counts                                                                                                                                                                               | ____________________________ (cells/mm3 )                                                                                 | the lowest CD4 counts the patient has had. 2684395                                               |
| Treatment                                                                                                                                                                                                                         |  Initial  Adjuvant  Progression after initial  Recurrence  Palliative  Unknown                                                                                                            | Text term to identify the reason for the  administration of a treatment regimen. 2793511                                  |                                                                                                  |
| *12                                                                                                                                                                                                                               | Indication of  Regimen                                                                                                                                                                          |  Chemotherapy  Radiation  Radiation and Chemotherapy  Stem Cell Transplant  Surgery  No Treatment  Other Treatment | Text term that describes the kind of treatment that  was given for the primary lymphoma. 3284925 |
| Lymphoma                                                                                                                                                                                                                          |                                                                                                                                                                                                 |                                                                                                                           |                                                                                                  |
| *13                                                                                                                                                                                                                               | Treatment  Type                                                                                                                                                                                 |                                                                                                                           |                                                                                                  |
| *14                                                                                                                                                                                                                               | If other,                                                                                                                                                                                       | Indicate the other treatment type for the lymphoma.                                                                       |                                                                                                  |
| specify                                                                                                                                                                                                                           | ____________________________________                                                                                                                                                            | 2861111                                                                                                                   |                                                                                                  |
| Chemotherapy                                                                                                                                                                                                                      | Date chemotherapy started.                                                                                                                                                                      |                                                                                                                           |                                                                                                  |
| 15                                                                                                                                                                                                                                | Chemotherapy  Start Date                                                                                                                                                                        | __ __ / __ __ / __ __ __ __                                                                                               | 2897050 (month), 2897052 (day), 2897054 (year)                                                   |
| Did  chemotherapy  end during this  reporting  period?                                                                                                                                                                            |  Yes                                                                                                                                                                                           | Indicate whether chemotherapy administration ended                                                                        |                                                                                                  |
|  No                                                                                                                                                                                                                              | during this reporting period. 2188260                                                                                                                                                           |                                                                                                                           |                                                                                                  |
| 16                                                                                                                                                                                                                                | Date chemotherapy ended.                                                                                                                                                                        |                                                                                                                           |                                                                                                  |
| 17                                                                                                                                                                                                                                | Chemotherapy  End Date                                                                                                                                                                          | __ __ / __ __ / __ __ __ __                                                                                               | 2897056 (month), 2897058 (day), 2897060 (year)                                                   |
|  BACOP  C-MOPP  CAP-BOP  CHOP + Bleomycin  CHOP + Etoposide                                                                                                                                                                  | Text term or code to represent the name of a  pharmaceutical regimen containing two or more  agents which are given together or separately to treat  a patient with malignant lymphoma. 3366758 |                                                                                                                           |                                                                                                  |
| *18                                                                                                                                                                                                                               | Pharmaceutical  Regimen                                                                                                                                                                         |                                                                                                                           |                                                                                                  |  
| #                                                                                                                                                                                                                                                                                                                                                                                                                                                                | Data Element   | Entry Alternatives   | Working Instructions   |
|------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------|----------------|----------------------|------------------------|
|  CHOP-14  CHOP-14 + Rituximab  CHOP-21  CHOP-21 + Rituximab  CNOP  CODOX + Rituximab  CVP  DA-EPOCH  DA-EPOCH + Rituxumab  F-MACHOP  High Dose Methotrexate w/Leucovorin  HyperCVAD-Mtx/AraC + Rituximab  ICE  ICE + Rituxumab  LNH-84  LNH-87  M-BACOP  MACOP-B  ProMace-CytaBOM  ProMace-MOPP  VACOP-B  Vanderbilt regimen + Rituximab  Single Agent Therapy (please specify)  Other Pharmaceutical Regimen (please specify)  Unknown |                |                      |                        |  
| #                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                    | Data Element                                                                                                   | Entry Alternatives                                                                                                                                                                                                             | Working Instructions Text term or abbreviation to represent another name  of a pharmaceutical regimen containing two or more  agents which are given together or separately to treat  a patient with malignant lymphoma that was not  already mentioned or specified. 3366930   |
|--------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------|----------------------------------------------------------------------------------------------------------------|--------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------|---------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------|
| If Other  Pharmaceutical                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                             |                                                                                                                |                                                                                                                                                                                                                                |                                                                                                                                                                                                                                                                                 |
| 19                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                   | Regimen,  specify If Single-Agent                                                                              |                                                                                                                                                                                                                                |                                                                                                                                                                                                                                                                                 |
| 20                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                   | Therapy,  specify                                                                                              | Text name for agent used without other agents in a  treatment regimen or study. 3590022 The total number of cycles administered to the  patient of a protocol specified drug or therapy agent  as of the current report. 62590 |                                                                                                                                                                                                                                                                                 |
| Radiation Therapy  21 Number of  Cycles Radiation                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                    | Date radiation therapy started.                                                                                |                                                                                                                                                                                                                                |                                                                                                                                                                                                                                                                                 |
| 22                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                   | Therapy Start                                                                                                  | __ __ / __ __ / __ __ __ __                                                                                                                                                                                                    | 2897100 (month), 2897102 (day), 2897104 (year)                                                                                                                                                                                                                                  |
| Date Did radiation  therapy end  during this  reporting  period?                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                     |  Yes                                                                                                          | Indicate whether radiation therapy ended during this                                                                                                                                                                           |                                                                                                                                                                                                                                                                                 |
|  No                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                 | reporting period.                                                                                              |                                                                                                                                                                                                                                |                                                                                                                                                                                                                                                                                 |
| 23                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                   | Radiation                                                                                                      | Date radiation therapy ended.                                                                                                                                                                                                  |                                                                                                                                                                                                                                                                                 |
| 24                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                   | Therapy End                                                                                                    | __ __ / __ __ / __ __ __ __                                                                                                                                                                                                    | 2897106 (month), 2897108 (day), 2897110 (year)                                                                                                                                                                                                                                  |
| Date Total Dose of                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                   | A numeric value for the total dose volume of                                                                   |                                                                                                                                                                                                                                |                                                                                                                                                                                                                                                                                 |
| 25                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                   | Radiation                                                                                                      | __________________________ (Gy)                                                                                                                                                                                                | radiation therapy given to a patient, in Gray.                                                                                                                                                                                                                                  |
| Therapy                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                              | 36                                                                                                             |                                                                                                                                                                                                                                |                                                                                                                                                                                                                                                                                 |
|  Abdomen, total  Arm  Body, total  Bone, non-spine  Brain, focal  Brain, whole  Breast  Chest wall  Eye  Gastrointestinal, colon  Gastrointestinal, gallbladder  Gastrointestinal, intestine  Gastrointestinal, Liver  Gastrointestinal, NOS  Gastrointestinal, Pancreas  Gastrointestinal, Stomach  Genitourinary, Bladder  Genitourinary, Kidney  Genitourinary, NOS  Head, Face, or  Neck  Leg  Lung  Lymph node,  distant (specify site)  Lymph node,  locoregional (specify  site)  Lymph Nodes  Mantle  Mediastinum  Parametrium  Pelvis  Shoulder  Skin, lower  extremity, local  Skin, total  Skin, trunk, local  Skin, upper  extremity, local  Spine  Supraclavicular  Thorax  Trunk | Text term to identify anatomically-specified areas or  fields that are targeted for radiation therapy. 2416537 |                                                                                                                                                                                                                                |                                                                                                                                                                                                                                                                                 |
| Radiation                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                            |                                                                                                                |                                                                                                                                                                                                                                |                                                                                                                                                                                                                                                                                 |
| 26                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                   | Field,  extranodal                                                                                             |  Other  Unknown                                                                                                                                                                                                              |                                                                                                                                                                                                                                                                                 |
|  Axillary  Cervical  Epitrochlear  Femoral                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                       | Identify lymph node sites targeted for radiation  therapy. 3762198                                             |                                                                                                                                                                                                                                |                                                                                                                                                                                                                                                                                 |
| 27                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                   | Nodal Regions  Targeted                                                                                        |                                                                                                                                                                                                                                |                                                                                                                                                                                                                                                                                 |  
| #                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                    | Data Element                                                                               | Entry Alternatives                                                             | Working Instructions                                                                            |
|------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------|--------------------------------------------------------------------------------------------|--------------------------------------------------------------------------------|-------------------------------------------------------------------------------------------------|
|  Hilar  Iliac-common  Iliac-external  Inguinal   Mediastinal  Mesenteric  Occipital  Paraaortic  Parotid  Popliteal  Retroperitoneal   Splenic  Submandibular  Supraclavicular                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                         |                                                                                            |                                                                                |                                                                                                 |
| 28                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                   | Other, specify                                                                             | _________________________                                                      | Specify other field of radiation 62999                                                          |
| Stem Cell Transplantation  Type of Stem  29 Cell  Transplantation  Autologous  Syngeneic/Allogeneic related donor  Allogeneic, unrelated donor                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                    | Indicate the hematopoietic stem cell source type. 2957417                                  |                                                                                |                                                                                                 |
| Date of Stem                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                         | Indicate the date of the hematopoietic stem cell                                           |                                                                                |                                                                                                 |
| 30                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                   | Cell                                                                                       | __ __ / __ __ / __ __ __ __                                                    | transplant.                                                                                     |
| Transplantation                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                      | 3718671                                                                                    |                                                                                |                                                                                                 |
| Surgery                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                              | Indicate the date related to the procedure of                                              |                                                                                |                                                                                                 |
| Date of cancer                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                       | __ __ / __ __ / __ __ __ __                                                                | surgically removing as much of the tumor as possible                           |                                                                                                 |
| 31                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                   | debulking                                                                                  | being executed.                                                                |                                                                                                 |
| surgery                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                              | 2839523                                                                                    |                                                                                |                                                                                                 |
| Measure of  Success of  Outcome at the  Completion of  Initial First  Course  Treatment                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                              |  Progressive Disease  Persistent Disease  Stable Disease  Partial Remission/  Response |  Complete  Remission/Response  Unknown  Not Applicable  (treatment ongoing) | Indicate the patient's measure of success after the  initial first course of treatment. 2786727 |
| 32 New Tumor Event Information Complete this section if the patient had a new tumor event. If the patient did not have a new  tumor event (or if the TSS does not know) indicate this in the question below, and the  remainder of this section can be skipped. Note: The New Tumor Event section on OpenClinica can be completed multiple times, if the patient had multiple New Tumor  Events. First Recurrence or Progression Has the patient  developed a  first relapse or  progression  that has not  been  previously  reported? Indicate whether the patient has been diagnosed with  a first recurrence or progression. 2002502  Yes  No  Unknown 33* Date of First  Provide the date documenting the initial  34 Recurrence or  __ __ / __ __ / __ __ __ __ identification of reappearance or advancement in  extent or severity of cancer.  Progression 62998  Locoregional Recurrence   Locoregional Disease  Distant Metastasis  Recurrence  New Primary Tumor Indicate whether the patient's new tumor event was a  locoregional recurrence, a distant metastasis, or a  new primary tumor. 311972135 Type of New  Tumor Event |                                                                                            |                                                                                |                                                                                                 |  
| #                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                          | Data Element                                                                                                                         | Entry Alternatives                                                                                                   | Working Instructions Description of the anatomic location of progression  of disease for malignant lymphoma.  3282650   |
|--------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------|--------------------------------------------------------------------------------------------------------------------------------------|----------------------------------------------------------------------------------------------------------------------|-------------------------------------------------------------------------------------------------------------------------|
|  Mesenteric lymph  nodes  Nasal Soft Tissue  Nasopharynx  Occipital lymph  nodes  Orbit  Oropharynx  Ovary  Pancreas  Paraaortic lymph  nodes  Parotid Gland  Parotid lymph nodes  Peri-orbital Soft  Tissue  Pericardium  Peripheral Blood  Pleura/ Pleural  Effusion  Popliteal lymph  nodes  Prostate  Rectum  Retroperitoneal  lymph nodes  Salivary Gland  Sinus  Skin  Small Intestine  Soft Tissue (muscle,  ligaments, subcutaneous)  Splenic lymph nodes  Stomach  Submandibular lymph nodes  Supraclavicular lymph nodes  Testes  Thyroid  Uterus |                                                                                                                                      |                                                                                                                      |                                                                                                                         |
|  Adrenal  Appendix  Ascites/ Peritoneum  Axillary lymph nodes  Bone  Bone Marrow  Brain  Breast  Cervical lymph nodes  Colon  Conjunctiva  Epididymis  Epidural  Epitrochlear lymph nodes  Esophagus  Femoral lymph nodes  Gastrointestinal/  Abdominal  Heart  Hilar lymph nodes  Iliac-common lymph  nodes  Iliac-external lymph nodes  Inguinal lymph nodes  Intraocular  Kidney  Large intestine  Larynx  Leptomeninges  Liver  Lung  Mandible  Maxilla  Mediastinal/ Intrathoracic  Mediastinal lymph nodes  Mediastinal soft tissue                |                                                                                                                                      |                                                                                                                      |                                                                                                                         |
| Site of First  Malignant                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                   |                                                                                                                                      |                                                                                                                      |                                                                                                                         |
| 36                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                         | Lymphoma  Progression                                                                                                                |  No known  extranodal involvement  Other Extranodal  Site                                                          |                                                                                                                         |
| Other  Specified  Extranodal Site  of First  Malignant  Lymphoma  Progression                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                              | If the patient had a new tumor event and the site of  this tumor was not included in the provided list,  describe the site.  3282651 |                                                                                                                      |                                                                                                                         |
| 37                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                         | ____________________________________                                                                                                 |                                                                                                                      |                                                                                                                         |
| Was Site of  First                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                         |                                                                                                                                      |                                                                                                                      |                                                                                                                         |
| 38                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                         | Progression Biopsied?                                                                                                                | If the patient has had progression of disease, indicate  whether the site of first progression was biopsied. 2716366 |                                                                                                                         |
|  Yes  No  Unknown                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                       |                                                                                                                                      |                                                                                                                      |                                                                                                                         |  
| #                                                                                                                                                                                                       | Data Element                                                                                                                                  | Entry Alternatives                                                                                                                             | Working Instructions                                                                                                                                                                                                                                                                                                    |                  |
|---------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------|-----------------------------------------------------------------------------------------------------------------------------------------------|------------------------------------------------------------------------------------------------------------------------------------------------|-------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------|------------------|
| If biopsied,  what was the                                                                                                                                                                              |                                                                                                                                               |                                                                                                                                                |                                                                                                                                                                                                                                                                                                                         |                  |
| *39                                                                                                                                                                                                     | Histological  Subtype?                                                                                                                        |  Burkitt lymphoma, classic morphology  Burkitt lymphoma, atypical morphology  Other Histological Type, specify  Unknown                    | Using the patient's final diagnostic pathology report,  provide the most detailed histological subtype  available.  3282652 Specify the structural pattern of malignant lymphoma cells at the time of biopsy for first progression of  malignant lymphoma different from those already  specified or mentioned. 3282653 |                  |
| Additional New Tumor Events Other  Specified  40 _____________________________ Histologic  Type Has the patient  developed a  second  progression or  relapse that has  not been  previously  reported? | Indicate whether the patient had a second progression  or relapse that has not been previously reported. 3137510                              |                                                                                                                                                |                                                                                                                                                                                                                                                                                                                         |                  |
|  Yes  No  Unknown                                                                                                                                                                                    |                                                                                                                                               |                                                                                                                                                |                                                                                                                                                                                                                                                                                                                         |                  |
| *41                                                                                                                                                                                                     |  Locoregional Recurrence   Locoregional Disease  Distant Metastasis  Recurrence  New Primary Tumor  No new Tumor Event  Not applicable | Indicate whether the patient's new tumor event was a  locoregional recurrence, a distant metastasis, or a  new primary tumor. 3119721          |                                                                                                                                                                                                                                                                                                                         |                  |
| 42                                                                                                                                                                                                      | Type of New  Tumor Event                                                                                                                      | If the patient had a new tumor event, provide the date  of diagnosis for this new tumor event. 3104044 (month), 3104042 (day), 3104046  (year) |                                                                                                                                                                                                                                                                                                                         |                  |
| *43                                                                                                                                                                                                     | Date of New                                                                                                                                   | ____ ____ /                                                                                                                                    | ____ ____ /                                                                                                                                                                                                                                                                                                             | ___ ___ ___ ____ |
| Tumor Event                                                                                                                                                                                             | (month)                                                                                                                                       | (day)                                                                                                                                          | (year)                                                                                                                                                                                                                                                                                                                  |                  |
| General Comments                                                                                                                                                                                        |                                                                                                                                               |                                                                                                                                                |                                                                                                                                                                                                                                                                                                                         |                  |  
Principal Investigator (*Printed Name*)
Principal Investigator (*Signature*) Date I acknowledge that the above information provided by my institution is true and correct and has been quality controlled.