Advocacy Groups that Do Not Yet Have a Registry

If your group does not yet have a registry, there are a couple of options for how your participants can share their data. Members of the ClinGen team have worked with multiple patient groups to create registries in the past and would be happy to discuss the process of creating a registry with your group. Contact us at

Encourage Your Individuals and Families to Share via GenomeConnect

If your organization is not yet ready to think about creating a registry, your patients can share their data by registering with GenomeConnect.

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Create a Patient Registry

Invitae provides one option to help you create a patient registry called a Patient Insight Network (PIN) for your group. Partner with ClinGen once the PIN has been launched to securely share your data. Through Invitae’s Advocacy Partner Program, non-profit organizations can start a PIN at no cost and brand it to their cause. We believe that medical advances are made faster when data is shared and patients are in control of their data. Learn more by clicking here.

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