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Strengthen the Evidence for Maternal and Child Health Programs

Search Results: MCH Organizations

This list of organizations is drawn from the MCH Organizations Database. Contact information is the most recent known to the MCH Digital Library.


Displaying records 1 through 8 (8 total).

Mountain States Genetics Regional Collaborative (MSGRCC )

Annotation: The Mountain States Genetics Regional Collaborative (MSGRC) -- formerly the Mountain States Genetic Network -- is a consortium of providers and consumers of genetic services in Arizona, Colorado, Montana, New Mexico, Texas, Utah, Wyoming, and Nevada. Members include representatives of state health departments, university medical schools, genetic services laboratories, hospitals, private medical practices, and various consumer organizations. The group is a regional network that provides a forum for problem sharing and solving, provides referrals, promotes efficient use of resources, and facilitates improvement of the quality and quantity of genetic services offered in the Mountain States region. The network maintains an online events calendar and provides links to genetics centers and resources.

Keywords: Genetics, Arizona, Colorado, Consortia, Data collection, Genetic counseling, Genetic services, Information services, Montana, New Mexico, Problem solving, Regional genetics networks, Utah, Wyoming

National Coordinating Center for the Regional Genetic and Newborn Screening Service Collaboratives

Annotation: The National Coordinating Center for the Genetics and Newborn Screening Regional Service Collaboratives (NCC) -- which was established along with seven Genetics and Newborn Screening Regional Collaborative Groups (RCs) in 2004 -- is part of the federal initiative to improve the health of children and their families by promoting the translation of genetic medicine into public health and health care services. The NCC provides infrastructure, coordination, technical assistance, and resources to the various RCs. The coordinating center also facilitates local projects and uses communities identified through the RCs to pilot test materials for policymakers, health professionals and families. Technical assistance is provided to the RCs in the areas of telemedicine, legal issues, and the assessment of state and federal legislation that may affect the delivery of genetic and newborn screening services. NCC's webcasts on topics such as financing of newborn screening and genetic services and the use of telegenetics to increase access to services are archived at www.mchcom.com. Other online resources include a page for parents and families; resources for professionals; links to glossaries and reference services; newsletters, reports, and other publications; and advocacy and support group information. The NCC is formed as a partnership with the Genetic Services Branch of the Maternal and Child Health Bureau (HRSA) through a cooperative agreement with the American College of Medical Genetics (ACMG). The NCC is organized around a central office and an Advisory Committee which includes the seven RCs and representatives of national organizations that serve as resources to the NCC and the RCs.

Keywords: Genetics, Resource centers, Federal programs, Genetic services, Genetics education, National MCH resource center, Neonatal screening, Newborn infants, Public health, Regional genetics networks

National Newborn Screening and Genetics Resource Center (NNSGRC)

Annotation: The National Newborn Screening and Genetics Resource Center (NNSGRC) is a cooperative agreement between the Maternal and Child Health Bureau (MCHB), Genetic Services Branch and the University of Texas Health Science Center at San Antonio (UTHSCSA), Department of Pediatrics. The mission of the NNSGRC is to: 1) provide a forum for interaction between consumers, health care professionals, researchers, organizations, and policy makers in refining and developing public health newborn screening and genetics programs; and 2) serve as a national resource center for information and education in the areas of newborn screening and genetics. The NNSGRC serves as a focal point for national newborn screening and genetics activities, and provides related resources to benefit health professionals, the public community, consumers, and government officials. The center also provides technical assistance to assist states in refining their newborn screening activities and enhancing their capacity to incorporate new developments in genetics, health promotion, and disease prevention. The NNSGRC coordinates and facilitates national discussions of pertinent topics in the areas of newborn screening and genetics, assists in developing and implementing related demonstration projects of national interest., and produces annual national information reports on state and territorial newborn screening activities. The Web site provides downloadable newborn screening and disease-specific brochures in various languages, a guide to regional genetics and newborn screening collaboratives as well as state-specific contact information; and the National Newborn Screening Information System, which services as a information collection and reporting system for capturing state and territorial newborn screening information. In September 2009 it was funded to create the National Newborn Screening Clearinghouse.

Keywords: Genetics, National MCH resource center, Neonatal screening, Online databases, Regional genetics networks, Resource centers

NERGG, Inc. (NERGG)

Annotation: NERGG, Inc., formerly known as the New England Regional Genetics Group, is a consortium of providers and consumers of genetic services in Connecticut, Maine, Massachusetts, New Hampshire, Rhode Island, and Vermont. Members include representatives of state health departments, university medical schools, genetic services laboratories, hospitals, private medical practices, and various consumer organizations. The group is a regional network that collects data, provides a forum for problem sharing and solving, promotes efficient use of resources, and facilitates improvement of the quality and quantity of genetic services offered in the New England region. The NERGG Web site was funded in part by a grant from the Maternal and Child Health Bureau.

Keywords: Regional genetics networks, Genetic counseling, Genetic services, Genetics, Spanish language materials

New England Genetics Collaborative (NEGC )

Annotation: The New England Genetics Collaborative (NEGC) works to promote and improve the 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. The primary goal of the NEGC is 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. NEGC provides online educational materials, a regional resource directory, and links to other genetics centers. The NEGC is a partnership between the Dartmouth Hitchcock Medical Center, the New Hampshire Institute for Health Policy and Practice, and the University of New Hampshire Institute on Disability. The collaborative is supported by a cooperative agreement with the US Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health Bureau, Genetic Services Branch.

Keywords: Genetics, Consortia, Genetic services, Maine, New Hampshire, Vermont, Massachusetts, Rhode Island, Connecticut., Federal programs, Public health , Newborn infants, Neonatal screening, Genetic counseling, Regional genetics networks

New York State Genetic Services Program and Newborn Screening Program ( )

Annotation: New York State Genetic Services Program and Newborn Screening Program coordinates state grants to comprehensive and noncategorical clinical genetics units throughout the state. This assures that all residents of the state can access genetic diagnosis, testing, counseling and treatment regardless of their social, economic, or geographic circumstances. The state newborn screening program tests all newborns born in New York State for 40 congenital diseases and HIV. Program follow-up assures that all children identified by the program are properly referred to specialty care centers. These centers are approved by New York state to provide quality medical care to all children identified by the program. Educational materials are available in Spanish, French, Chinese, and other languages.

Keywords: Regional genetics networks, Genetic counseling, Genetic services, Genetics, Health education, Medical research, New York, Spanish language materials, Virgin islands

New York-Mid-Atlantic Consortium for Genetic and Newborn Screening Services (NYMAC )

Annotation: The New York-Mid-Atlantic Consortium for Genetic and Newborn Screening Services (NYMAC) was established in September 2004 as one of seven regional collaboratives in the country funded by the Genetic Services Branch in the Health Resources and Services Administration (HRSA)'s Maternal and Child Health Bureau. The charge of this group is to develop a regional approach to address the maldistribution of genetic resources in the New York-Mid-Atlantic region, which includes Delaware, District of Columbia, Maryland, New Jersey, New York, Pennsylvania, Virginia and West Virginia. The Wadsworth Center, New York State Department of Health is the lead institution for this project.

Keywords: Regional genetics networks, Federal programs, Genetic services, Genetics, Newborn infants, Neonatal screening, Delaware, District of Columbia, Maryland, New Jersey, New York, Pennsylvania, Virginia, West Virginia., Public health

Southeastern Regional Genetics Group (SERGG)

Annotation: The Southeastern Regional Genetics Group (SERGG) is a network of providers of clinical genetic services, public health departments, consumers, and related laboratory services working together with affected individuals and their families. SERGG collects and disseminates information about genetic services, newborn screening programs, and other public health services related to genetics in the region, and supports research to promote better genetic services. The Group works to enhance the quality of genetic services in the Southeastern Region which includes the states of Alabama, Florida, Georgia, Louisiana, Mississippi, North Carolina, South Carolina, Tennessee, Puerto Rico, and the Virgin Islands and to provide a forum for exchange of information among professionals who provide genetic services and the consumers of these services in the southeastern region of the United States.

Keywords: Regional genetics networks, Alabama, Consortia, Data collection, Florida, Genetic counseling, Genetic services, Genetics, Georgia, Information services, Kentucky, Louisiana, Mississippi, North Carolina, Problem solving, Puerto Rico, South Carolina, Tennessee, Virgin Islands

   

This project is supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under grant number U02MC31613, MCH Advanced Education Policy, $3.5 M. This information or content and conclusions are those of the author and should not be construed as the official position or policy of, nor should any endorsements be inferred by HRSA, HHS or the U.S. Government.