For Advocacy Groups with an Existing Patient Registry


ClinGen is working with Invitae to help patient registries and advocacy groups collect and share their genetic test results to advance genomics. Invitae is a genetic information company that also offers a secure online registry program, known as a Patient Insights Network (PIN), for advocacy groups. Invitae’s PIN program began as PatientCrossroads (also known as AltaVoice) and has securely housed and safeguarded patient registry data for the past 10 years.


If your organization has a PIN through Invitae, you can participate in the ClinGen 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. 


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