Geisinger investigators launch patient portal as part of National Institutes of Health genetic research initiative
Portal for patients to enter health history opens doors for better understanding of human genome
DANVILLE, Pa., Oct. 21, 2014 /PRNewswire-USNewswire/ -- Today, the Clinical Genome Resource (ClinGen), a National Institutes of Health (NIH)-funded resource dedicated to analyzing data from thousands of clinical genetics tests each year, announced the launch of a new patient portal, GenomeConnect (www.genomeconnect.org).
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 bolsters 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," 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 Geisinger Genomic Council encourages the use of reference laboratories that have pledged to contribute past, present and future genomic data to national databases in an effort to increase medical knowledge and improve patient care.
"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," said Christa Lese Martin, a principal investigator of the ClinGen project and director of the Autism & Develpomental Medicine Institute at Geisinger. "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."
Patient portals like GenomeConnect make genomic discoveries possible by bringing together information from a large number of patients. 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. Additional information is available at www.clinicalgenome.org, and patients with interest can register for a personal account at genomeconnect.org.
About Geisinger Health System
Geisinger Health System is an integrated health services organization widely recognized for its innovative use of the electronic health record, and the development of innovative care models such as ProvenHealth Navigator® and ProvenCare®. As one of the nation's largest rural health services organizations, Geisinger serves more than 2.6 million residents throughout 44 counties in central and northeast Pennsylvania. The physician-led system is comprised of more than 21,000 employees, including a 1,100-member multi-specialty group practice, eight hospital campuses, two research centers and a 467,000-member health plan, all of which leverage an estimated $7.4 billion positive impact on the Pennsylvania economy. The health system and the health plan have repeatedly garnered national accolades for integration, quality and service. In addition to fulfilling its patient care mission, Geisinger has a long-standing commitment to medical education, research and community service. For more information, visit www.geisinger.org, or follow the latest Geisinger news and more on Twitter and Facebook.
CONTACT: Mike Ferlazzo, 570-214-7410, 515-450-2908 (c), [email protected]
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SOURCE Geisinger Health System
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