What is it?
GenomeConnect is a secure patient portal, or registry, where patients voluntarily share and store health information. The information is available to healthcare providers and researchers who are interested in studying certain conditions and in learning more about human health.
Who can participate?
GenomeConnect is open to anyone age 18 and older, and to minors under the age of 18 who have consent from a parent or legal guardian. The participant must have had genetic testing, be considering genetic testing, or have family members who have had genetic testing.
Who sponsors GenomeConnect?
GenomeConnect is a project of the Clinical Genome Resource (ClinGen), a National Institutes of Health–funded organization dedicated to building a central resource of clinically relevant genomic variants to be used in precision medicine and research that improves patient care.
There are many reasons to participate. Individuals with rare conditions may want to join the registry to connect with other individuals or families like themselves to share information and offer support. Researchers use registries to identify people who have certain conditions or gene variants that the researchers may want to study. Bringing together information and large amounts of data from patients helps researchers advance the medical care of patients with rare diseases.
How do I participate?
Sign up at GenomeConnect.org to create a personal portal account. You will be provided with details on what information is collected and what information others can access. You will be asked to sign an electronic consent form. Once you’ve completed it, you can upload your genetic testing reports and complete health information surveys. GenomeConnect will not release any personal information about you without your permission.