The Clinical Genome Resource (ClinGen), a National Institutes of Health-funded resource dedicated to analyzing data from thousands of clinical genetics tests each year, has announced the launch of a new patient portal.
Called GenomeConnect, it was developed by Geisinger Health System investigators and collaborators from the ClinGen project to establish an online patient community where people who previously had genetic testing can input their test results for analysis by the ClinGen team.
The online portal bolsters the ClinGen laboratory database by coupling patient-entered health information with clinical laboratory data for a comprehensive database that helps clinicians and researchers better understand genetic variants and their impact on health.
GenomeConnect also allows patients who underwent genetic testing to interact with each other in a secure online community.
A data repository, even one as robust as ClinGen, is just the first piece of the pie when it comes to fully understanding the role genetics play in the prevention of disease and the development of treatments and therapies, said Andrew Faucett, director of policy and education, Geisinger Health System. By allowing patients to input additional medical information, GenomeConnect is designed to empower patients and allow them to contribute to our understanding of the human genome. Together with patients, we can learn more about the human genome and the ability to re-establish contact with patients and request additional information about their health information is critical to the clinical use of genetic testing.
The project is enrolling an unlimited number of participants with genetic test results and their family members, and participation takes place entirely online using a computer, smartphone or tablet.
The site, including information on registration, is available here.
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