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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 15 (15 total).

Association of Public Health Laboratories (APHL)

Annotation: The Association of Public Health Laboratories is a nonprofit, private organization representing public health laboratories throughout the United States. The organization's mission is to promote the role of public health laboratories in support of national and global health objectives, and to promote policies and programs which assure continuous improvement in the quality of laboratory practice. The association was previously known as the Association of State and Territorial Public Health Laboratory Directors (ASTPHLD).

Keywords: Neonatal screening, Health promotion, Laboratory techniques, Public health, Training

Baby's First Test: the Newborn Screening Clearinghouse (NBSC)

Annotation: Baby's First Test: the Newborn Screening Clearinghouse (NBSC) is funded to increase awareness of newborn screening, and to improve the understanding and informed decision-making capacity of expectant and new parents, health professionals, industry representatives, and the public. Information available in the NBSC includes: condition-specific information, contact information for the condition-specific advocacy organizations, information about what conditions each state screens for, data supplied by the public health laboratories, and general information about the process of newborn screening. It is funded through a cooperative agreement with the Maternal and Child Health Bureau.

Keywords: Clearinghouses, Neonatal screening

Brazelton Institute

Annotation: The Brazelton Institute is dedicated to promoting the healthy development of infants and families, through research and education programs for people who care for children and their families in the first years of life. The Institute is based in the Department of Pediatrics at the Children's Hospital in Boston, which is an affiliate of the Harvard Medical School. The Institute is the home of the Neonatal Behavioral Assessment Scale and provides training for clinicians and researchers on the Neonatal Behavioral Assessment Scale (NBAS) (Brazelton and Nugent, 1995) and of the Newborn Behavioral Observations (NBO) system. (Nugent, Keefer, O'Brien, Johnson, Blanchard, 2005)

Keywords: Infant development, Neonatal screening

Hawaii Department of Health, Genetics Program

Heartland Regional Genetics and Newborn Screening Collaborative

Annotation: The Heartland Regional Genetics and Newborn Screening Collaborative -- formerly the Great Plains Regional Network -- encompasses the eight states of Arkansas, Iowa, Kansas, Missouri, Nebraska, North Dakota, Oklahoma, and South Dakota, all working together to promote access to quality clinical genetic services, genetic testing, and public health programs for the citizens of the states within the Heartland collaborative. The collaborative works to improve access to expanded newborn screening, professional and public genetics literacy, equitable access to genetics evaluation, counseling and testing services, and cooperation between neighboring states within the region. The collaborative aims to facilitate and promote collaboration, assessment, planning, program development and evaluation, education, research and public policy activities related to these issues. The web site is designed to facilitate communication within the collaborative and to inform the collaborative of regional genetics resources, projects and events. The collaborative is one of seven Genetics and Newborn Screening Regional Collaborative Groups (RCs) designated by the Genetics Services Branch, Bureau of Maternal and Child Health, Health Resources and Services Administration in 2004.

Keywords: Genetics, Genetic services, Newborn infants, Neonatal screening, Regional genetics network, Arkansas, Iowa, Kansas, Missouri, Nebraska, North Dakota, Oklahoma, South Dakota, Public health, Federal programs

National Center for Hearing Assessment and Management (NCHAM)

Annotation: The goal of the National Center for Hearing Assessment and Management (NCHAM) is to promote the earliest possible detection of hearing loss and the best possible techniques for assisting people with hearing loss. The center aims to establish universal newborn hearing screening as an accepted, national standard of care, in order to dramatically lower the age at which children with congenital hearing loss are identified and served. The center conducts research, develops training materials and publishes a newsletter, provides training and technical assistance, and disseminates information about early identification and management of hearing loss. The center was established in 1995 and is supported by the U.S. Maternal and Child Health Bureau to serve as a resource center to support screening programs nationwide through a comprehensive National Early Hearing Detection and Intervention Technical Assistance System.

Keywords: Infants, Hearing screening, National MCH resource center, Neonatal screening, Resource centers

National Center on Birth Defects and Developmental Disabilities, Early Hearing Detection and Intervention Program (EHDI)

Annotation: The Early Hearing Detection and Intervention (EHDI) program at the National Center on Birth Defects and Hearlng Disorders collaborates with federal, national, and state agencies and organizations in assisting states and territories to develop and implement EHDI programs and assists states in building EHDI data and surveillance systems to improve their capacity to ensure that all infants are screened for hearing loss and receive appropriate follow-up services. It supports research efforts to identify causes of hearing loss, determines developmental outcomes and family issues, collectsInformation on referral rates from EHDI programs, assesses the effectiveness and cost of EHDI programs, uses information gained through the EHDI surveillance systems to find new and preventable causes of hearing loss, and maintains an information clearinghouse on issues related to EHDI that will be available through the EHDI web site and bi-monthly teleconferences.

Keywords: Hearing screening, Hearing tests, Neonatal screening, Newborn infants

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

National Resource Center for Early Hearing Detection and Intervention (NRC EHDI)

Annotation: The National Resource Center for Early Hearing Detection and Intervention (NRC EHDI) assists state agencies and other federal and non-federal partners in the development and operation of sustainable statewide EHDI systems. It provides technical assistance activities, including resource development, education and training, policy initiatives, and evidence-based data collection. The Web site lists technical assistance contacts by federal region, collaborating agencies, and information and resources for components of EHDI, such as newborn hearing screening, diagnostic audiology, early intervention, legislation, program evaluation, and financing. Educational and training videos and information about state programs are also available.

Keywords: Infants, Hearing screening, National MCH resource center, Neonatal screening, Resource centers

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-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

Newborn Screening Information Center (NBSIC)

Annotation: The Newborn Screening Information Center (NBSIC) provides information, materials, and resources about newborn screening in the United States to help increase awareness, knowledge, and understanding of newborn screening and genetic conditions. It aims to: define NBS, describe the NBS process, and explain how that process relates to follow up, diagnosis, and treatment; identify the conditions included as part of NBS; list the types of NBS results and describe what happens after screening for babies with each type of result; connect parents, parents-to-be, and health care providers with state-specific NBS resources; and help readers learn about updates in NBS. Lists of the specific disorders screened by each state are included. It also provides information on each of the conditions listed in the Recommended Uniform Screening Panel (RUSP) and information on other conditions that are not listed on the RUSP but are screened in some states. This website is maintained by the Health Resources & Services Administration’s Maternal and Child Health Bureau (MCHB),

Keywords: Genetic disorders, Genetic services, Neonatal screening, Resource centers

Region 4 Midwest Genetics Collaborative

Annotation: The Region 4 Midwest Genetics Collaborative is one of seven groups using a regional approach to improve access to services, quality care, and genetics expertise in a medical home environment that is culturally sensitive. The region 4 collaborative comprises public health agencies, geneticist and other subspecialists, primary care providers, newborn screening and genetic testing laboratories, and families of children with genetic conditions from seven states (Illinois, Indiana, Kentucky, Michigan, Minnesota, Ohio, and Wisconsin). The website provides news and resources including information about partners, forums, workgroups, education, and regional meetings. The project is administered by the Michigan Public Health Institute and supported by the Health Resources and Services Administration Maternal and Child Health Bureau.

Keywords: Federal programs, Genetics, Genetic services, Regional genetics network, Newborn infants, Neonatal screening, Illinois, Indiana, Kentucky, Michigan, Minnesota, Ohio, Wisconsin, Public health

Save Babies Through Screening Foundation

Annotation: Save Babies Through Screening Foundation works to improve the lives of children and their families, by working to prevent disabilities and death resulting from disorders detectable through newborn screening tests. The Foundation educates parents, pediatric healthcare providers, and policy makers about available comprehensive newborn screening, the importance of obtaining positive or other test results requiring follow-up actions within 5 days of birth, and the importance of prompt confirmatory testing and treatment/management when needed.

Keywords: Advocacy, Genetic screening, Neonatal screening, Newborn infants

   

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.