Genetics and Newborn Screening
  Region 1 Collaborative         

Project Title:                  The New England Genetics Collaborative

Applicant Name:            The Institute On Disability at the University of New Hampshire

Project Period:               June 1, 2007 – May 31, 2008

Problem:

The Northeast Region I, consisting of the six New England (NE) states is varied by race, ethnicity and socioeconomic status. There are approximately 173,000 births each year and population of 13,922,517. Diversity in demographics and health care options results in variable distribution of services across the region. While extensive medical resources are concentrated in this region, NE is a unique mix of urban and rural regional differences, with service delivery challenges across the states which the NEGC continues to work with providers to address.

Goals and Objectives:

The NE Genetics Collaborative (NEGC) was established to assure that individuals with genetic disorders and their families have access to quality care and appropriate genetic expertise and information in the context of a medical home that provides accessible, family-centered, continuous, comprehensive, coordinated, compassionate, and culturally effective care.

The goals and objectives of the NEGC are the result of initial work by the current cooperative agreement (NE Regional Genetics and Newborn Screening Collaborative HRSA Cooperative Agreement # 1U22MC03959).  The NEGC completed a 2-day planning retreat on May 3 and 4, 2007 to finalize the NEGC Regional Plan for the June 1, 2007 start date for this cooperative agreement. The planning retreat was attended by stakeholders from all NE states and included service providers, consumers, public health staff and leadership in the field of genetics and public health. Also in attendance was Jill Shuger, HRSA GSB Project Office for this cooperative agreement. The planning session gave project staff insight into the issues and concerns of individual states, consumers and affiliated stakeholders to shape the work of the NEGC. It also initiated some key relationships to build the collaboration.

Methodology:

The NEGC has established an Advisory Committee that includes representation from all NE states to provide guidance and overall direction for all project activities. The NEGC also established eight Work Groups to address specific goals and objectives in the areas of Dissemination, Education and Marketing; Quality Improvement, Medical Home, Transition, Special Education; Ethical, Legal and Social Issues, Laboratory Quality Assurance and Long Term Follow-Up. The Chair of each Work Group is a member of the Collaborative Council. This group has met to begin to address collectively issues, concerns, opportunities and barriers that have arisen.

Coordination:

The NEGC has established relationships and developed successful partnerships with organizations and institutions across the region including state agencies, public health, public laboratories, health care providers, academic medical and research centers, academic programs including LEND and UCED, national policy associations, genetic counselors, health educators and key constituents including policy makers and consumers.  Each New England state is represented on the NEGC Advisory Committee and the Collaborative Council, bringing local knowledge and solutions to regional and national attention. 

Evaluation:

The Evaluation Team supporting the NEGC’s efforts sought to accomplish two primary objectives: 1) assisting project staff in understanding their progress towards achieving primary goals, including an overview of barriers and facilitators to project success; and 2) documenting outcomes and impacts of the project related to fund expenditures. Evaluation efforts have been fully integrated into all project activities and guided by core project assumptions of collaboration, partnership, state and regional improvement and sustainability. The ultimate goal is that the evaluation efforts will support the development, implementation, and sustainability of collaborative efforts that are directed at overall improvement in the NE states’ and the region’s ability to provide quality genetic, newborn screening, medical home, follow-up, laboratory, educational, and transition services and supports to children with genetic conditions and their families throughout the duration of the cooperative agreement.