For Advocates & Groups
Learn more about how other registries or patient groups can share data by working with ClinGen.
Our understanding of the relationship between genetic variants and health relies of data sharing. Both genetic and health information is vital to the process of understanding what variants predispose to disease. ClinGen has engaged patients in data sharing for nearly five years through its own patient registry, GenomeConnect. Given our experience with GenomeConnect, we are now working with other patient registries to enable sharing of de-identified genetic and health information.
Registries on Other Platforms or Advocacy Groups without a Registry
If your registry or organization is interested in providing your participants the options to share data, contact the ClinGen team to discuss your data sharing options.Contact Us