Patients are the experts about their medical history and genetic information, and GenomeConnect was developed to empower patients to help researchers and clinicians in the effort to understand the genetic contribution to health and disease. GenomeConnect is a not-for-profit project developed by the Clinical Genome (ClinGen) Resource to engage patients as partners in data sharing efforts.
A patient registry, like GenomeConnect, is a secure place for patients to voluntarily share and store detailed information, so that connections can be made between that information and healthcare providers and researchers who wish to study it. Registries make medical discoveries possible by bringing together information from a large number of patients.
People are interested in registries for different reasons:
- Individuals who have a rare condition or genetic variant might join a registry to find other individuals or families like themselves with whom they can communicate, share information and offer support.
- Researchers trying to study a particular condition or gene may use a registry to identify people who have that condition or variant in that gene and invite them to participate in a research study.
GenomeConnect will help integrate the participants into ongoing research by providing a way to share medical and genetic data through a secure online registry system, hosted by PatientCrossroads
Participation in GenomeConnect will help increase the amount of data available to researchers and doctors, which is vital for the advancement of medical care of rare disease.
If you are considering participation in GenomeConnect or want to just learn more about the registry, check out our frequently asked questions , download the GenomeConnect flyer attached below for more information, or visit Clinical Genome (ClinGen) Resource page describing GenomeConnect for further details.
Click below to print the registry flyer