Registry and Biorepository Working Group call
Please join this zoom call hosted by the Registry and Biorepository Working Group. Most months these calls will be held the 4th Wednesday of every month, and will serve to convene the Working Group on a regular basis to ensure that tasks are being completed and new ideas can be shared.
The next HRA Registry and Biorepository Working Group call will be on January 27 from 2pm to 3pm EST. The call will focus on the topic of returning value back to participants. There will be 2 presentations for 15-20 minutes each by members of the WG covering the topics specified below. The goal is to create an environment for open dialogue on this topic.
Elise Hoover, PKD Foundation – patient portal dashboard, newsletter, study matching capabilities, and additional relevant topics
James Beck, Parkinson’s Foundation – return of genetic results to patients, key terms to include in consent, risks regarding sharing genetic data for research, and additional relevant topics