Minutes of caDSR Content Administrators Meeting

**September 24, 2007, 3:00 -- 4:30 p.m.**

+-------------------------------------+--------------------------------+
| **Attendees**                       | **Organization**               |
+=====================================+================================+
| ######### Robinette Aley            | NBMDP                          |
+-------------------------------------+--------------------------------+
| ######### Alice Birnbaum            | NIDCR                          |
+-------------------------------------+--------------------------------+
| ######### Brian Campbell            | EMMES                          |
+-------------------------------------+--------------------------------+
| ######### Janice Chilli             | SAIC                           |
+-------------------------------------+--------------------------------+
| Mary Cooper                         | SAIC                           |
+-------------------------------------+--------------------------------+
| Tommie Curtis                       | SAIC                           |
+-------------------------------------+--------------------------------+
| ######### Kathleen Gundry           | SAIC                           |
+-------------------------------------+--------------------------------+
| ######### Amy Jacobs                | LM - MSD                       |
+-------------------------------------+--------------------------------+
| ######### Thomas Joshua             | NBMDP                          |
+-------------------------------------+--------------------------------+
| ######### Larry Hebel               | Scenpro                        |
+-------------------------------------+--------------------------------+
| ######### Jocelyn Leatherwood       | SAIC                           |
+-------------------------------------+--------------------------------+
| ######### Brenda Maeske             | SAIC                           |
+-------------------------------------+--------------------------------+
| Dianne Reeves                       | NCICB                          |
+-------------------------------------+--------------------------------+
| Daniela Smith                       | BAH                            |
+-------------------------------------+--------------------------------+
| Nicole Thomas                       | LM - MSD                       |
+-------------------------------------+--------------------------------+
| John White                          | TerpSys                        |
+-------------------------------------+--------------------------------+

1.  **Data Standard Updates**

**VCDE Small Groups -- Prefix and Suffix Codes**

Mary Cooper reviewed the comments that had been received during caBIG
review of Person Name Prefix Code. Virginia Hetrick had commented that
the definition for Doctor should reflect a physician may not have a
doctorate degree. The VCDE small group agreed to modify the definition
for Doctor to, "A courtesy title for a person who has received a
doctoral degree or practices medicine." Dianne Paul had questioned
whether a person would actually provide their birth name or rather what
they are called as First Name (i.e.' Bob rather than Robert.) The VCDE
small group noted that, while this is a valid concern, it is out of
scope for their current work. Claire Wolfe had a number of comments
about the utilization of Templates for data standards. After reviewing
the Templates proposed for the Person Name Prefix Code standard, the
small group decided to withdrawn the proposed Templates for Name Prefix
and recommend that the small group working with Suffix Codes take the
same action.

Brenda Maeske presented a final review of the proposed Person Name
Suffix Codes that were suggested during VCDE small group review. She
reported that the VCDE voted on the Suffix Code proposal and it will go
to the caBIG community for full review as part of the Person Name
standard. She noted that she is updating the specification document and
will send that to Daniela Smith when completed.

2.  **Review Family Relationship Data Standard**

Mary had introduced the Family Relationships standard at the last
content meeting. She provided a more detailed presentation at this
meeting. The standard focuses on capturing next of kin information -
both nuclear families, as well as extended family information (including
those relationships established by law -- foster, step, etc.). The team
looked at HL7 and several Population Science surveys as well as DICOM
use cases. Mary said that cultural or religious relationships
(godfather) were out of scope, as well as living arrangements (except
for domestic partners which could be included) and lineage
relationships.

She reviewed the seven existing CDEs in the caDSR and noted the CDE
components, including Object Classes (several different concepts
assigned) and Value Domains (some coded; some not -- and including
values like daughter, father, brother, half-brother, mother's sister).
The goal for the data standard is to harmonize the permissible values
while capturing a terms describing the relationship as well as the
relationship type.

Mary proposed capturing Person Family Member Type and Person Family
Member Relationship Type. She asked for opinions on the distinction
between Relative and Relationship and she provided Thesaurus term
definitions to help support the distinction. Tommie Curtis pointed out
that there are at least two reasons information about relationships may
be captured: personal genetic relationships versus people in a person's
environment. Mary displayed the proposed definitions that she had
captured; one (Relative) focused on the family relationship by blood or
marriage, the other (Related) on more general living arrangements (like
roommates). She proposed using Relationship Type. Brian Campbell
concurred that it sounded better. Dianne Reeves said the concept
"traditional family" should be removed from the draft definition as it
might raise too many questions or issues about its meaning.

Mary presented two options for expressing the information described
above. In the first, she showed the 2 separate CDEs/Value Domains for
Family Member Type (parent, father, mother, guardian, cousin) and Person
Family Member Relationship Type (Full or Whole, Step, Adopted). In the
second, she also showed the option of a single CDE/VD with Person Family
Member Relationship with a "bulk list" that combines the information in
a single value (i.e. half-brother). Brian said he preferred the bulk
list with the assumption that relationships were full or whole unless
specified other (like half or step). Brian said that there was no point
in adding additional values unless there were more specific use cases.

Mary invited comments before the next meeting. She said at the next
meeting she would flesh out the bulk list and would present the full
details for final approval.

3.  **Final Review Education Levels**

Janice Chilli presented the Value Domain portion of this standard for
final review. She has been working with Nicole Thomas to add EVS terms
for Value Meanings. There are two different ways to define the concepts
being considered -- 1) a description of an education level program and
2) identification of a level completed. For this data standard, the EVS
super concept is Education Level Completed so the proposal is to add the
term "completion" to the Value Meaning terms. The definition of these
terms would not describe the program content, rather just that it has
been completed. As an example, the Value Domain would have the
permissible value as 11^th^ Grade, the Value Meaning as 11^th^ Grade
Completion, and the Value Meaning Description as "Indicates 11^th^ grade
is the highest level of education achieved." It was agreed to send this
forward to the VCDE for their review as soon as the concept terms had
been entered into Thesaurus.

4.  **Continuation of Baseline Metrics Discussion**

At the last meeting the group discussed standards for CDE completeness
and established what metadata attributes will be considered mandatory,
optional, and conditional. The presentation today illustrated the kinds
of Oracle Discoverer/Excel reports that could be produced. Mary
clarified that the team had yet to establish a baseline, pending
complete agreement on the standards for completeness.

Dianne said she would like each context to be able to run their own
Discover Report to monitor their own metadata. Tommie said that a
license for Oracle Discoverer would be required to extract the
information presented in today's presentation, but that there are may be
other ways to get access to the data. The graphics illustrated were
prepared in Excel.

Mary noted that Jocelyn Leatherwood ran queries on missing definitions
for CDEs, DECs, and VDs, and plotted bar graphs based on year created.
The data showed change over time, and allowed for analysis of amount of
missing information and the reason for it (its administrative status,
for example). In all examples, the majority of missing definitions were
prior to 2004. Most administered items were still in Draft New workflow
status although many had been modified after creation. A list of items
by Context can be provided for review and clean-up.

Dianne said we needed to identify compliance goals for each component.
Mary clarified that this could be based on the agreement on
mandatory-conditional-and optional components. Mary also agreed to add
compliance goals completeness criteria previously adopted and present
that at a future meeting. Dianne said she would like to set goals for
the program as a whole and gave the example of percentage of CDEs with a
certain quality measure.

5.  **Identify New Data Standard Candidates**

At the last VCDE meeting Brian Davis circulated a list of standard
vocabularies needed to annotate models. Dianne said that a number of
data standards have been proposed over time by the community (See
Attachment A.). She reported that work had started on Agent Names. She
said that the AJCC Staging and LOINC for lab test names were high
priority to get started. Mary Cooper said that she had started work on
the AJCC Staging standard. Dianne said she would provide a point of
contact for Mary to work with in development of the metadata for the
data standard.

Tommie suggested that Medical History could be addressed like Person,
with a number of individual CDEs to be standardized to become a complete
Medical History set. Tommie also asked about working on Vital Signs.
Dianne said that this would involve multiple CDEs and would take time to
accomplish. She wanted to focus on data standards where other community
standards could be adopted. Mary said that she anticipated that a number
of standards could emerge from the CTMS workspace, such as Patient Study
Calendar and other emerging models. Brenda commented that there were
CDEs used across applications/models that would be the highest priority.
There was a question about the status of Units of Measure. Mary said
that progress was made on getting the appropriate terms into EVS, and
that some CDEs had been created using the Units of Measure CDEs
currently registered with a Standard registration status. She said that
if that was a priority, she could return to work on Units of measure to
try to get it standardized.

There was some discussion of the effort involved in developing and
reviewing standards. Dianne asked about the status of the NACCR
standards. Mary and Tommie have worked on these, but there are several
hundred CDEs involved so it is taking time to register.

Dianne invited community input on standards priorities. Brenda said that
DCP had a need to standardize Body Organs/Body Sites/Body Systems.
Janice said that there are different levels of granularity required for
different use cases. Dianne said that there is a new anatomic site
reference standard she could check on. There was a discussion of the
DICOM standard. It was noted that registering it in caDSR would be a
huge effort. Tommie said that the caBIG community could adopt DICOM, but
only register the content as needed. Janice said that DICOM had
flexibility that allowed users to just create their own tags, and that
vendors and developers often took advantage of this.

A list of possible standards candidates is attached to the minutes
(Attachment A). Examples with yellow highlighting are candidates for the
next standards to be developed. Content developers were asked to send
suggestions for data standards to Dianne.

**Decisions:**

1.  The group agreed that the Person Family Member Relationship standard
    should include a "bulk list" Value Domain.

2.  It was agreed to send the Education Level proposed standard to the
    VCDE once the concepts had been entered into EVS.

    **Meeting Schedule for 2007 and 2008:**

**[2007]{.underline}**

10/01 - Software

10/08 - Holiday

10/15 -- Software/Content

10/22 - Content

10/29 - Software

11/05 - Content

11/19 - Content

11/26 - Software

12/03 -- Content

12/17 -- Content

12/24 -- [No meeting]{.underline}

12/30 -- [No meeting]{.underline}

**[2008]{.underline}**

01/07 - Software/Content

01/14 - [Holiday -- MLK Day]{.underline}

01/21 - Software/Content

01/28 - Content

02/04 - Software

02/11 - Content

02/18 - [Holiday -- Washington's Birthday]{.underline}

02/25 - Content/Software

03/03 - Software

03/10 - Content

03/17 - Software

03/24 - Content

03/31 - Software

04/07 - Content

04/14 - Software

04/21 - Content

04/28 - Software

05/05 - Content

05/12 - Software

05/19 - Content

05/26 - [Holiday -- Memorial Day]{.underline}

06/02 - Content/Software

06/09 - Software

06/16 - Content

06/23 - Software

06/30 - Content

07/07 - Software

07/14 - Content

07/21 - Software

07/28 - Content

08/04 - Software

08/11 - Content

08/28 - Software

08/27 - Content

09/01 - [Holiday -- Labor Day]{.underline}

09/08 - Content/Software

09/15 - Software

09/22 - Content

09/29 - Software

10/06 - Content

10/13 - [Holiday --Veterans Day]{.underline}

10/20 - Content/Software

10/27 - Software

11/03 - Content

11/10 - Software

11/17 - Content

11/24 - Software

12/01 - Content

12/08 - Software

12/15 - Content

12/22 - Software

12/29 - Content

**[Follow Up/Action Items]{.underline}:**

+-------+------------------------+------------+-----------+-----------+
| **A   | **Task**               | **Assigned | **Date    | **Date    |
| ction |                        | To**       | Due**     | Co        |
| I     |                        |            |           | mpleted** |
| tem** |                        |            |           |           |
+=======+========================+============+===========+===========+
| 1     | Send out Agenda to be  | Tommie     | biweekly  | Ongoing   |
|       | reviewed for next      | Curtis     |           |           |
|       | meeting                |            |           |           |
+-------+------------------------+------------+-----------+-----------+
| 2     | Send out a request to  | Tommie     | TBD       | Ongoing   |
|       | the workspaces for CDE | Curtis     |           |           |
|       | standards.             |            |           |           |
|       |                        | Brian      |           |           |
|       |                        | Davis      |           |           |
+-------+------------------------+------------+-----------+-----------+
| 3     | Develop risk           | Dianne     | TBD       | Ongoing   |
|       | mitigation plan for    | Reeves     |           |           |
|       | usage of caDSR         |            |           |           |
|       | metadata that in not   | Tommie     |           |           |
|       | fully compliant with   | Curtis     |           |           |
|       | caDSR business rules   |            |           |           |
|       | and best practices.    |            |           |           |
+-------+------------------------+------------+-----------+-----------+
| 4     | Review list of value   | All        | TBD       | Ongoing   |
|       | domain types and add   |            |           |           |
|       | examples and text for  |            |           |           |
|       | each.                  |            |           |           |
+-------+------------------------+------------+-----------+-----------+
| 5     | Send training workbook | Jenny      | 5/29/07   | Ongoing   |
|       | examples of value      | Brush      |           |           |
|       | domains to Tommie      |            |           |           |
|       | Curtis to be included  |            |           |           |
|       | in best practice       |            |           |           |
|       | document.              |            |           |           |
+-------+------------------------+------------+-----------+-----------+
| 6     | Create "bulk list"     | Mary       | 10/15/07  | New       |
|       | Value Domain for       | Cooper     |           |           |
|       | Person Family Member   |            |           |           |
|       | Relationship proposed  |            |           |           |
|       | standard.              |            |           |           |
+-------+------------------------+------------+-----------+-----------+
| 7     | Finalize Value Domain  | Janice     | 10/8/07   |           |
|       | for Education Levels   | Chilli     |           |           |
|       | proposed standard.     |            |           |           |
+-------+------------------------+------------+-----------+-----------+
| 8     | Create a text format   | Mary       | 10/8/07   |           |
|       | compliance criterion   | Cooper     |           |           |
|       | for mandatory,         |            |           |           |
|       | conditional and        |            |           |           |
|       | optional items.        |            |           |           |
+-------+------------------------+------------+-----------+-----------+
| 9     | Send suggestions for   | All        | 10/15/07  |           |
|       | possible standards     |            |           |           |
|       | candidates to Dianne   |            |           |           |
|       | Reeves.                |            |           |           |
+-------+------------------------+------------+-----------+-----------+

**Attachment A: Data Standard List (Developing Organization)**

**Completed:**

Address

Age

Body Mass Index

Body Surface Area

Date/Time

Email

Ethnicity

Functional Performance

Genomic Identifiers

Language

Marital Status

Person Name

Race

Religion

Organization

Sex and Gender

Social Security Number

Telephone Number

Units of Measure (UCUM) (in VCDE Small Group)

**In Progress:**

1 Person Prefix (VCDE Review)

2.  Person Relationships (Context Administrators)

3.  Educational Levels (Context Administrators)

4 Person Suffix VCDE review)

**Next in the Queue:**

[Agent Names - Concomitant]{.mark} Treatment, Study Agent, Prior Agent
(Context Administrators)

Laboratory Test Names -- LOINC

Diagnosis

[Staging - Cancer Grades and Stages -- see AJCC]{.mark}

[Tooth Numbering System]{.mark}

Possible Areas for Standardization:

Accrual

Adverse Events

[Body Organ]{.mark}

[Body Sites]{.mark}

[Body Systems]{.mark}

BioPax (ICR)

Bio Specimens (Tissue Types)

PSI-MI (ICR)

CAP Protocols (TBPT)

Cause of Death

Definition of Standard Terms

Dosage Routes

Dosage Schedule

[Drug Identification and Nomenclature]{.mark}

Eligibility

Enrollment

Financial Billing (CTMS)

Imaging - DICOM

KEGG Ontology (ICR)

Laboratory Results (CTMS)

Locational/Geospatial Address

Medical History

mzXML (ICR) -- Rproteomics

North American Association of Central Cancer Registries (NAACCR) Data
Dictionary

On Study/Off Study Reasons

Patient/Participant Identification

Protein Identification (ICR) - PIR

Protocol Identification

Protocol Description (CTMS) -- BRIDG

SO (sequence ontology) (ICR)

Standard Terminologies

Study Management

Vitals Signs