New England Genetics Collaborative (NEGC)
Office Location: Durham, New Hampshire
States: Connecticut, Rhode Island, Massachusetts, New Hampshire, Maine, Vermont
Principle Investigator and Co-Director: Monica McClain, PhD
Co-Director: John Moeschler, MD, MS
Mission Statement: “The mission of the New England Genetics Collaborative (NEGC) is to promote and improve health and social well-being of those with inherited conditions through collaborations among public health professionals, private health professionals, educators, consumers and advocates in Maine, New Hampshire, Vermont, Massachusetts, Rhode Island and Connecticut.”
Featured Resources/Activities: The NEGC has a number of resources available for patients, families, and providers. For example, the Genetic Education Materials for School Success (GEMSS
) is a resource for teachers, therapists, counselors, parents and schools to help support students with genetic conditions to ensure attending school a successful experience. The Family Care Plan is a communication tool designed to foster the Medical Home concept and improve a shared care plan between families, primary physicians, and specialists. The Transition Tool Kit was created to aid adolescent transition into the adult healthcare system. The NEGC has also produces newborn screening brochures in multiple languages and guides and toolkits for various genetic conditions, among many other resources.
Summary of Projects: The New England CCHD Newborn Screening Project aims to develop processes for CCHD screening that will improve health outcomes for newborns with CCHD and their families. The goal of the NEGC’s Long Term Follow-Up (LTFU) Project is to establish a system that will track care throughout the life of an individual diagnosed with a condition during newborn screening.
The New England Genetics Collaborative
10 West Edge Drive
Suite 101, Durham, NH 03284