Geisinger Launches New GenomeConnect Patient Portal
By Christine Kern, contributing writer
Patient portal is designed to enter patient health history to understand human genomes.
The Clinical Genome Resource (ClinGen), a National Institutes of Health (NIH)-funded resource, has announced the launch of GenomeConnect, a new patient portal, according to a press release.
ClinGen analyzes data from thousands of clinical genetics tests annually. The new portal was developed by researchers from Geisinger Health System and 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 secure online portal thus couples patient-entered health information with clinical laboratory data, providing ClinGen with a comprehensive database that can assist in the understanding of genetic variants and their effects on health.
Andrew Faucett, director of policy and education, Geisinger Health System, stated, “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.
“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.”
Christa Lese Martin, a principal investigator of the ClinGen project and director of the Autism & Developmental Medicine Institute at Geisinger, explained, “In order to advance patient care and continue genomic work to help improve the interpretation of genetic variants, it is vital that data from clinical testing be made publicly available while simultaneously respecting patient confidentiality. GenomeConnect honors both of these pledges and will pay long-term dividends in patient care by developing an unrivaled database of genetic and clinical information.”
As Health IT Analytics explains, genetic testing provides the ability to apply analytics to medicine and personalize treatments based upon an individual’s genetic likelihood to respond to certain therapies. Genetic testing has been successful in treating certain types of cancer, thanks in part to big data crunchers like IBM Watson and enormous pools of clinical and test data like the Cancer Genome Atlas.
Researchers still have a long way to go, Health IT Analytics cautioned, in order to accomplish low-cost, high-accuracy testing for the general patient population. According to a recent study in JAMA, current DNA sequencing techniques may not be catching as many as one fifth of inherited disease genes.
It is through the adoption of patient portals like GenomeConnect, that collect large amounts of data from diverse patient populations, that it is possible to further genomic research. GenomeCollect 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.