GenomeConnect: The ClinGen Patient Registry

The primary method for patients to share data health and genetic information is through our patient registry, GenomeConnect.  

GenomeConnect is an online tool to connect people who are interested in sharing de-identified genetic and health information to improve the understanding of genetics and health. GenomeConnect is a not-for-profit project developed by the Clinical Genome (ClinGen) Resource to engage patients as partners in data sharing efforts. GenomeConnect is hosted by PatientCrossroads, a secure online registry system.

Get Started

Learn what participation in Genome Connect involves.

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Frequently Asked Questions

Interested in learning more about GenomeConnect and how it works? 

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Sample Consent and Assent Form

Want to review the consent and assent form before signing up? Download here.

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Sample Health Survey

Want to review the health survey before signing up? Download here.

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Recruitment Materials

Help us spread the word about GenomeConnect.

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Stay up to date on GenomeConnect news.

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Posters and Presentations

Download posters presented about GenomeConnect.

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Learn more about the people who run GenomeConnect.

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