US Health Institute’s Genetic Research Launches New Patient Portal

A new portal created for patients to enter health history has been designed to provide a new opportunity for investigators to obtain a better determination of the human genome.

The Clinical Genome Resource (ClinGen), a US National Institutes of Health (NIH; Bethesda, MD, USA)-funded resource focused on analyzing data from thousands of clinical genetics tests yearly, announced the launch of a new patient portal, GenomeConnect.

GenomeConnect was developed by a team of Geisinger Health System (Danville, PA, USA) 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 strengthens the ClinGen laboratory database (ClinVar) by combining 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 US databases in an effort to increase medical knowledge and optimize 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 lead investigator of the ClinGen project and director of the Autism & Developmental 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 such as GenomeConnect make genomic discoveries possible by integrating data 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 completely online using a computer, smartphone, or tablet.

Geisinger Health System is an integrated health services organization recognized for its innovative use of the electronic health record (EHR), and the development of new care models such as ProvenHealth Navigator and ProvenCare.

Related Links:
Clinical Genome Resource 
US National Institutes of Health
GenomeConnect patient portal