Patient Data Sharing Program: For Advocacy Groups with an Existing Patient Registry

ClinGen is working to help patient registries and advocacy groups collect and share their genetic test results to advance genomics. 

1. If your organization has a PIN through Invitae, the same platform at ClinGen's patient registry called GenomeConnect, you can participate in the Patient Data Sharing Program to have ClinGen experts curate and share participants’ genetic data. Sharing is simple for your participants! Interested participants are offered the choice to share their de-identified variant data and are not asked to do much beyond their normal PIN participation. Contact ClinGen ( or your Invitae PIN Coordinator ( to learn more. 

2. If your group has a registry through a different platform, contact the ClinGen team ( to discuss your data sharing options.

Additional Information

To learn more about the patient data sharing program, view our informational videos and resources here. 

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