GenomeConnect: The ClinGen Patient Registry


GenomeConnect is a patient portal, or registry, that is working to build the knowledge base about genetics and health that will allow researchers and doctors to study the impact of genetic variation on health conditions. This knowledge is key to the development of new treatments and therapies.

GenomeConnect is:

  • An online registry designed by the not-for-profit, NIH-funded Clinical Genome Resource (ClinGen) for people who are interested in sharing de-identified genetic and health information to improve our understanding of the relationship between genes and human health
  • Registry participants can connect with other individuals and families through GenomeConnect’s participant matching feature
  • Participants can also learn about other research opportunities and potentially receive updates about their genetic testing results


Registry Location International - available to Australians
Registry Participation Voluntary
Registry Contact

If you have questions about your participation in the registry, please contact us:



Adding New Patients to Registry

How Can I Participate?

Eligibility Criteria
GenomeConnect is open to anyone who has had genetic testing (or is the parent/guardian of someone who has had testing), regardless of the test results or diagnosis.

Please see the website for more information

Interested individuals can learn more here: