The NIH-funded Clinical Genome Resource (ClinGen) project has launched its patient portal at GenomeConnect. This site provides a patient registry for those who have already had or are contemplating genetic testing, or have family members who have been tested. It is open to the public for enrollment. Once a personal account is created, participants are asked to provide health history information through a survey, and upload genetic test results if available.
De-identified health and genetic information from participants in GenomeConnect will be shared with researchers and clinicians studying genetic associations with health outcomes. Participants will also be able to connect with other patients through the registry based on genetic variants and diagnosis. Personal information such as name, address and other personal identifiers will NOT be shared without express permission from participants. By freely sharing de-identified genetic and medical information, participants become a part of a potentially huge study to further understanding of the impact of genetics on health. The more participants, the greater the chance of medical discoveries that can influence future health care.