Genome Gateway™ offers web-based education and communication resources
A clinical education software platform developed by the Educational Outreach team will be used for a National Institutes of Health-funded research project at HudsonAlpha. The SouthSeq project will investigate how genome sequencing can help with the diagnosis and care of babies in neonatal intensive care units across the Southeast. Participants and their physicians will use Genome Gateway™, which manages interactions between genomic medicine patients and clinicians. In Genome Gateway, which is hosted on a HIPAA-compliant server, parents or family members will be able to engage in educational activities throughout their participation in the project.
“We’re fortunate to have a platform like Genome Gateway available to use for a research project that could potentially help families in our region,” said Greg Cooper, PhD, a HudsonAlpha faculty investigator who is leading the SouthSeq project. “We hope to use Genome Gateway to provide participants with study information and educational materials.”
SouthSeq is part of a network of nationwide sites called the Clinical Sequencing Evidence-Generating Research Consortium, or CSER2, and will enroll infants who are in neonatal nurseries with birth defects and/or other signs suggestive of a genetic disorder. CSER2 will focus on infants from regions surrounding Birmingham, Ala., and Jackson, Miss. The project is a collaboration between HudsonAlpha and the University of Alabama at Birmingham.
Adam Hott, an Educational Outreach team member who led Genome Gateway development, said data from the implementation of the platform demonstrates its utility as a tool for clinicians and researchers. The team at Smith Family Clinic for Genomic Medicine, where the software was first implemented, reported a 45-60 minute decrease in the length of clinic visits when patients used Genome Gateway. In addition, more than two-thirds of patients engaged with educational materials prior to their first visit.
“Genome Gateway is a truly unique platform that is demonstrating better clinical care, a more educated patient population, and a reliable data collection tool for researchers,” Hott said. “The development of the tool puts the users first; it’s designed for simple and intuitive interactions.”