The Institute on Disability (IOD) at the University of New Hampshire has received a three-year renewal for its New England Genetics Collaborative (NEGC) from the Health Resources and Services Administration of the U.S. Department of Health and Human Services.
With this grant renewal, the NEGC program will officially change its name to the New England Regional Genetics Network (NERGN). This rebranding is part of a national shift from a Collaborative to a Network Model. Each region will establish a network of partnerships and connections to link individuals and families to genetic services. A focus will be on linking medically underserved populations (based on poverty, rural geographic location, and/or populations that experience health disparities) to genetic service providers, and promoting efficient genetic services practices through the use of health information technologies such as telehealth/telemedicine.
Some new partners and dynamic projects that are in the works include:
- Community Health Worker (CHW) curriculum development and screening tool with the Regional Health Equity Council so appropriate identification and referrals for genetic services can be made.
- Project ECHO – Weitzman Institute and Genetic Metabolic Center for Education
Development and implementation of curriculum for complex pediatrics ECHO, providing genetics education on the management of complex conditions to primary care providers - eConsults (year 2) - Weitzman Institute
The electronic consultation, or , allows primary care providers (PCP) to solicit input from a specialist using a secure electronic platform in cases that do not or may not require the physical presence of the patient in the specialist’s office.
NERGN has also been revamping its website. The site now includes a searchable resource library and interactive map of resources in New England.
“The NERGN’s work is important to improve health equity and health outcomes in individuals with genetic conditions, reduce morbidity and mortality caused by genetic conditions, and strengthen and improve the quality of coordinated follow-up and treatment for comprehensive genetic services,” explains Dr. Peter Antal, Co-Director of the NERGN.
The New England Regional Genetics Network is one of seven regional organizations across the United States dedicated to narrowing the gap between what is and what can be, for individuals with genetic disorders. Funded by HRSA, the NERGN coordinates collaboration between representatives from public health, metabolic and genetic clinics, medical homes, academia, and parent groups to support innovation in genetics and improve access to genetic services.
