Patient Data Sharing Program
ClinGen is working to is working to better understand the relationship between genetics and health to improve patient care and research. This effort relies on gathering more information through data sharing. If your registry is on the same platform as GenomeConnect through Invitae, your group can opt to participate in the Patient Data Sharing Program.
If your group chooses to participate in the Patient Data Sharing Program, each participant will have the option to share their genetic and health information. Those that choose to share would complete a consent form through their registry account, and, if they have not already done so, would be asked to upload a copy of their genetic testing report.
The consent form allows a small number of members of the ClinGen patient data sharing program to access participants’ registry accounts to review their reports and prepare genetic and health data for sharing. All information shared is de-identified. As part of participation in data sharing, registry participants also have the option to receive updates about their genetic testing results from the ClinGen team should we learn that their variant classification on their uploaded report is out of date.