The Regional Genetic and Newborn Screening Service Collaboratives
In 2004 and 2007, the Maternal and Child Health Bureau of the Health Resources and Services Administration (MCHB/HRSA), Genetic Services Branch (GSB) awarded grants to seven Regional Genetic and Newborn Screening Service Collaboratives (RCs) and a National Coordinating Center (NCC) as part of larger on-going efforts to improve the health of children and their families by promoting the translation of genetic medicine into public health and health care services. The RCs work to strengthen and support the genetics and newborn screening (NBS) capacity of the States, and therefore the Nation, using a regional approach to addressing the maldistribution of genetic service providers. A fundamental goal of the overall program is to improve access to high quality healthcare services related to newborn screening and genetics within local communities. All activities and programs of the NCC/RC system strive to build linkages between primary care providers and medical home, geneticists, and other specialty providers, and public health, so that the needs of patients and families with heritable disorders are best served.
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New England Genetics Collaborative (NEGC)
Connecticut, Maine, Massachusetts, New Hampshire, Rhode Island, Vermont
The NEGC is dedicated to narrowing the gap between status quo and opportunity for individuals with genetic disorders. The NEGC facilitates collaboration to support innovation in genetics and improve access to genetic services among representatives from public health, metabolic/genetic and primary care practices, medical homes, academia, and parent groups, including ongoing work groups, such asthe Metabolic Clinics Quality Improvement Learning Collaborative, and special projects, such as Legal Analysis of Health Information Exchange in New England.
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New York-Middle Atlantic Consortium for Genetics and Newborn Screening Services (NYMAC)
Delaware, District of Columbia, Maryland, New Jersey, New York, Pennsylvania, Virginia, West Virginia
One of NYMAC's goals is to ensure that people with diseases with a genetic component have access to the services and care they need in the context of a health home. To that end, NYMAC awards grants for medical home collaborations and development of transition to adult care programs. In addition, we fund emergency planning for continuity of care so that patients and their families have uninterrupted access to clinical services, medications, supplies and medical foods. We are continually looking for new ways to improve this access and we encourage public and private health professionals to work with us on projects and activities as champions and partners.
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Southeast Regional Newborn Screening and Genetics Collaborative (SERC)
Alabama, Florida, Georgia, Louisiana, Mississippi, North Carolina, Puerto Rico, South Carolina, Tennessee, Virgin Islands
SERC is dedicated toimproving the health and quality of life of individuals with heritable disorders. Providing professionals with up-to-date, relevant information about newborn screening and geneticsis an important goal of SERC.
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Region 4 Genetics Collaborative
Illinois, Indiana, Kentucky, Michigan, Minnesota, Ohio, Wisconsin
We bring over 125 multidisciplinary professionals together from seven states to work strategically to improve the quality of newborn screening and genetic services.
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Heartland Regional Genetics and Newborn Screening Collaborative
Arkansas, Iowa, Kansas, Missouri, Nebraska, North Dakota, Oklahoma, South Dakota
In addition to the resources available on our website, the Heartland Genetics and Newborn Screening Collaborative is engaging primary care providers in our Clinical Services and Medical Home work groups. Earlier this year, we implemented a "Collaborative Partners" program to identify primary care providers interested in receiving further training in newborn screening. These providers will share their new knowledge with colleagues in their respective states and contribute to the work of the Heartland RC for a period of one year. Also, for the first time, two nurse practitioners now serve on the Heartland Advisory Board.
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Mountain States Genetics Regional Collaborative
Arizona, Colorado, Montana, New Mexico, Nevada, Texas, Utah, Wyoming
The MSGRCC provides a forum for public health professionals and clinical providers to collaborate on projects and activities related to newborn screening and genetic services. Through MSGRCC workgroups, professionals from the Mountain States engage in identifying program priorities and strategies for meeting the MSGRCC mission of improving access to genetic information, expertise, and services.
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Western States Genetics Services Collaborative
Alaska, California, Guam, Hawaii, Idaho, Oregon, Washington
The Western States Genetic Services Collaborative (WSGSC) has organized many activities and projects of interest to health care professionals. These include increasing reimbursement for genetic services, improving reimbursement for medical foods, and increasing access to genetic services using distance technologies.
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