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 AltaVoice (formerly known as PatientCrossroads), a secure online registry system.

Questions? Contact info@genomeconnect.org.

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Frequently Asked Questions

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Sample Consent and Assent Form

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Sample Health Survey

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Recruitment Materials

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Newsletters

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Posters and Presentations

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Staff

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