New England Genetics Collaborative
Project Description:
Problem: Newborn screening in Region 1 has expanded recently in response to increased technical capability of tandem mass spectrometry and to national leadership advocating for expansion. This project will build upon our experience with regionalized newborn screening to enhance genetic service capacity for genetic conditions identified by newborn screening and those identified clinically in Region 1. 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. The NEGC will address the following goals: Goal 1: Establish and maintain a regional center for genetics and newborn screening. Goal 2: Collaborate to facilitate access to genetics services, expertise and technology particularly for underserved populations and in rural areas. Goal 3. Develop effective practice models for adolescents and young adults with genetic conditions who are transitioning from pediatric to adult health care. Goal 4. Develop effective partnerships to further Medical Home practices in the region. Goal 5. Serve as the focal point for effective genetics education and dissemination of genetics information. Goal 6. Demonstrate effective collaborations with other regional and national stakeholders. Goal 7. Examine the relevant public policy and ethical, legal and social issues affecting individuals with genetic conditions, their families, and health care providers and educators. Goal 8. Utilize a small project program to accomplish unanticipated and innovative activities that emerge within the region. Goal 9. Provide opportunities to increase discussions with school systems and state special education leaders to improve access and support to educational services in the least restrictive environment. Goal 10. Complete both quantitative and qualitative evaluations of processes and outcomes of all goals, activities and projects undertaken by the NEGC.
Keyword(s):
regional coordinating center, genetic, newborn screening
Core Function(s):
Performing Technical Assistance and/or Training, Performing Research or Evaluation, Developing & Disseminating Information
Area of Emphasis
Quality Assurance, Education & Early Intervention, Health-Related Activities, Quality of Life, Other - Leadership, Other
Target Audience:
Students/Trainees (long or intermediate trainees), Community Trainees / Short term trainees, Professionals and Para-Professionals, Family Members/Caregivers, Adults with Disabilities, Children/Adolescents with Disabilities/SHCN, Legislators/Policy Makers
Unserved or Under-served Populations:
Geographic Areas, Rural/Remote, Other
Primary Target Audience Geographic Descriptor:
Regional, National
COVID-19 Related Data:
N/A
