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

ClinGen is working to help patient registries and advocacy groups collect and share their genetic test results to advance genomics. If your organization is interested in possibly creating you own registry, you can contact the ClinGen team to discuss your data sharing options and how we may be able to work with you to help participants share their information. 

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