JUNE 8, 1999 WORKING GROUP TELECONFERENCE MINUTES
The informatics working group of the Texas Cancer Genetics Network met on June 2, 1999 at 10 a.m. via teleconference. Present were Chris Amos, Jihong Zong, Jerry Kyle, Constance Johnson, Phillip Lum (all U.T.M.D.A.C.C), Denise Wahl, and Bess Buzzini, Sue Hilsenbeck (All B.C.M.) and Gail Tomlinson (UTSW). Sharon Plon could not attend the meeting because she had a patient scheduled at this time. Comments from Dr. Plon are indicated in parentheses.
The second pilot study has been completed. Phillip Lum did a great job of creating an Access database for transmission of the data. U.C. Irvine acknowledged receipt of the data but had not made any comments about its validity. The software uses a visual basic front end for edit checks. (The U.T.M.D. Anderson Group has provided this database to Sharon Plon at Baylor College of Medicine. The database was mainly created for transmission of data and may need substantial retooling for data management).
Sue Hilsenbeck stated that she had been using the script created by the Duke site and had not had any major problems with it. However, comments can be brought to the attention of the Core Data Elements committee, or there may be time for discussion at the Steering committee meeting.
We also discussed the website that Jerry Kyle has now uploaded onto a webserver. The URL is http://texas.cgnweb.org. We had originally discussed using passwords to protect access to the name and address files, but this was felt to cause too much restriction of potential users to the website. Therefore, Jerry Kyle and Chris Amos suggested not password protecting the collaborators in the TCGC, but collaborators could request that their addresses not be posted to the website.
Sue Hilsenbeck pointed out that the minutes contain confidential information and that this data should be password protected. Therefore, Jerry Kyle has password protected the minutes. For the website, the user name=cgn, password=texas. Comments on the website are being requested.
Dr. Amos then discussed the status of pilot proposals, and there was some brief discussion of the informed consent process. Dr. Amos suggested that the upcoming steering committee meeting will include a great deal of discussion concerning verbal consents and other issues concerning informed consent. [Sharon Plon indicated reluctance to consent individuals to the CGN until there is a certificate of confidentiality because she would then have two tiers of participants, and she might need to reconsent already participating subjects].