D R A F T
MINUTES OF CGN CORE DATA ELEMENTS
TELECONFERENCE
THURSDAY, SEPTEMBER 17, 1998
The meeting began at 10:00 AM Pacific Time, Dr. Hoda Anton-Culver presiding, Irvine Hall, UCI
AGENDA ITEMS:
1. Roll Call:
MEMBERS PRESENT:
UCI Staff: Maureen Gildea, Simon Nguyen, Alyce Klussman, recorder
MEMBERS UNABLE TO ATTEND:
Geri Mineau, Salt Lake City
Joellen Schildkraut, Duke Univ.
Barbara Weber, U.Penn, Philadelphia
Susan Nayfield, NCI
Dr. Anton-Culver prefaced the discussion of Agenda Items with introductory remarks about the goal of the working group, i.e., to prepare an instrument to be used by all Centers for presentation to the Steering Committee meeting October 19-20 in Washington, DC. The UCI draft was prepared using the core elements identified in the RFA, and will be used as the starting point for discussion during this meeting. She indicated that the discussion would include input received beforehand from members of the group, as noted in Agenda Items 4 through 8.
There followed a discussion of policy issues, including how the questionnaire is to be administered. Some Centers use the telephone, some face-to-face, some mail them, and some use electronic interviewing. There was concern expressed regarding re-contacting subjects in other studies and obtaining consent for interviews, as well as whether each Center could customize the questionnaire.
DECISION: For re-contacting subjects, Centers will have a choice of using telephone or sending the questionnaire partially completed with previously obtained information.
DECISION: Each Center MUST use the approved Core Data elements in the final Questionnaire, but may tailor additional questions to meet local needs.
It was agreed that there would be space for Center and Sub-Center designations.
After considerable discussion, it was agreed that the number of digits for the ID number would be 10—2 digits for Center, 2 digits for Sub-center, and 6 digits for local options.
A set of referral sources with check-off boxes will be added to the cover.
CGN CORE DATA ELEMENTS TELECONF.
Draft-MINUTES 9/17/98, P. 2ALL MEMBERS WERE ASKED TO SEND LIST OF REFERRRAL SOURCES TO ALYCE FOR COMPILATION AND INCLUSION IN DRAFT FOR STEERING COMMITTEE.
The use of Social Security Numbers was discussed. Georgetown does not currently obtain, but Carol will find out their policy. It was agreed that SSNs would be optional for each Center, but Dr. Anton-Culver emphasized that these numbers must not be sent to UCI INFORMATICS CENTER.
In the first column, it was agreed to insert "current" before Ht. And Wt, and to use inches and pounds as entries.
There was considerable discussion about the ethnic/racial background items. It was agreed to insert "biological " for each parent, but the list of options as printed will stand until MEMBERS SEND LIST OF WHAT THEY CURRENTLY USE TO ALYCE FOR INCORPORATION INTO 2ND DRAFT. Maureen will include codes in the Data Dictionary for review in the next Teleconference.
In the second column, the first question will read, "What is your Family’s religious affiliation?" A check-off blank will be added for self, mother, and father for each religion, and "unknown" will be added as a category.
Highest level of schooling will be changed to 5 categories: 8 years or less, some high school, high s
chool grad or GED, some college, and college grad or beyond.
Seattle does not use Marital Status question because of sensitivity. Polly will check with P.I. for clarification. Georgetown uses with good results. It was agreed to change the "married" to "married or living as married" and to leave the question in as modified.
After extensive discussion, it was agreed that order of the questions would be changed, that the. exact age @ DX rather than a range would be used, and that Dr. Anton-Culver would check the RFA to determine if the question on serious medical conditions is REQUIRED OR IF IT COULD BE DELETED.
ALL MEMBERS ARE ASKED TO SEND A LIST OF CONDITIONS THAT YOU WOULD LIKE INCLUDED IN MEDICAL HISTORY AND WE WILL COMPILE FOR 2nd DRAFT OF INSTRUMENT..
D. PAGE 4:
It was agreed to delete the question on brothers and sisters and ask the number of births and age at first birth.
The family members question will be reworded to gather information on family members without asking if they had cancer. The categories will include Year of birth, alive/dead, whether they had cancer, age @ Dx. Sons and daughters will be added as another family category before grandparents.
In the Social history column, it was agreed that the tobacco use needed revision, and should include "total years of tobacco use. Alcohol use question was discussed, with no agreement on how to obtain accurate information, or if it is necessary.
In the second column, the physical activity questions were discussed, and at this point, Dr. Anton-Culver asked members to think about revising the alcohol use questions and the physical activity questions—whether to delete, keep, or modify—and respond to Alyce with other
materials to be submitted.
CGN CORE DATA ELEMENTS TELECONF.
The question on genetic testing was discussed at length, with concerns expressed about its value, how used, and why information needed. Dr. Anton-Culver stated that the question was REQUIRED by NCI and SHE WILL CONTACT NCI FOR CLARIFICATION ON THE PURPOSE OF THIS QUESTION FOR NEXT MEETING.
For Contact information, it was agreed to add: "best time to reach you" and "other contact"
The meeting was adjourned at 12:00pm Pacific Time.
SUMMARY:
Review of 2nd draft Questionnaire for consensus on core data elements based on member input
Recommendations for proposed genetic testing question
Use of SSN’s
Review Data Dictionary
Recorder: A.Klussman, UCI (949) 824-5284