Investigators at the Danville, Pa.-based Geisinger Health System have launched an online portal allowing patients to enter their data from clinical genetics tests for analysis by the Clinical Genome Resource.
The Clinical Genome Resource (ClinGen) is a National Institutes of Health (NIH)-funded resource dedicated to analyzing data from thousands of clinical genetics tests each year.
The portal, GenomeConnect, was developed by a team of 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 will aim to bolster the ClinGen laboratory database (ClinVar) 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," Andrew Faucett, director of policy and education, Geisinger Health System, said in a statement. "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."