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.

Groups on Same Registry Platform as GenomeConnect

These groups can opt to launch the patient data sharing program in their registry. Launching the program would mean that each participant is given the option to share data within the registry.

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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.

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