Prospective Ascertainment for Late Effects Among Survivors of Cancer, Tumor, or a Related Illness

Study Overview
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Brief Summary
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The purpose of this study is to establish a registry of survivors of cancer, tumor, or a related illness.

Official Title
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Prospective Ascertainment for Late Effects Among Survivors of Cancer, Tumor, or a Related Illness

Conditions
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Pediatric or Young Adult Cancer Survivors

Intervention / Treatment
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* Genetic: Family History Questionnaire (FHQ)
* Genetic: Salvia sample
* Other: Blood sample


Participation Criteria
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Eligibility Criteria
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Inclusion Criteria: English speaking A personal history of cancer tumor, or a related illness Followed in the the Adult Long Term Follow Up Program, Pediatric Long Term Follow Up Program, or Lymphoma Service at MSKCC Exclusion Criteria: Evidence of active progression of disease or recurrence Neurocognitive deficits that impair ability to give informed consent.
Sexes Eligible for Study
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All

Accepts Healthy Volunteers
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No

Study Plan
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How is the study designed?
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Arms and Interventions

| Participant Group/Arm | Intervention/Treatment |
| --- | --- |
| Cancer Survivors<br>The purpose of this study is to establish a registry of survivors of cancer, tumors,or a related illness. The registry will include detailed family history and germline DNA. Ultimately, we hope to improve our understanding of genetic susceptibility to secondary malignant neoplasms and other late effects among survivors of cancer, tumors, or a related illness. | Genetic: Family History Questionnaire (FHQ)<br>* Consented subjects will be given the Family History Questionnaire (FHQ) to complete either in clinic or at home. Subjects who chose to complete the FHQ at home will be given a stamped envelope with a label. For participants who are children and cannot fill out the questionnaire on their own, the clinic RSA will instruct the parent, guardian, or legally authorized representative (LAR) present to fill out the questionnaire, reminding them that the You in the questionnaire refers to their child.<br>Genetic: Salvia sample<br>* The saliva samples will be collected in Oragene DNA Self-Collection Kits or a similar product. Patients will be instructed to donate about 2ml of saliva into a vial, which contains 2ml of product. Oragene or similar solution.<br>Other: Blood sample<br>* Subjects will be offered the option of a blood collection instead of saliva. For adult subjects who opt for blood collection, two tubes of blood (approximately 20cc) will be drawn from the utilizing a sterile technique. For subjects under the age of 18 who opt for blood collection, approximately 3-5cc of blood will be collected utilizing a sterile technique.<br>|

What is the study measuring?
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Primary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| establish a registry of DNA | For the purpose of facilitating future genetic laboratory investigations of late effects among of survivors of cancer, tumors, or a related illness. Patients in the ALTFU Program are followed for secondary malignant neoplasms and other adverse outcomes (so-called late effects) including cardiomyopathy, pulmonary fibrosis, cardiac valvular pathology, osteoporosis, and others. The following data will be ascertained from each study participant: (1) family history information will be ascertained using the Family History Questionnaire (Appendix A); and (2) saliva or blood samples for genetic analysis. | 4 years | 

 Terms related to the study
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Keywords Provided by Centre Hospitalier Valida
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Family History Questionnaire (FHQ), Blood sample, Salvia sample, 12-145