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Items in this list may be obtained from the sources cited. Contact information reflects the most current data about the source that has been provided to the MCH Digital Library.


Displaying records 1 through 20 (58 total).

New York State Department of Health, Wadsworth Center. n.d.. Childbirth education toolkit. Albany, NY; New York State Department of Health, Wadsworth Center,

Annotation: This toolkit is for midwives, doulas, and other childbirth educators to introduce newborn screening into midwifery practices and into nontraditional settings including childbirth education classes. Brochures, videos, and other educational materials are provided for the states of New York, Delaware, District of Columbia, Maryland, New Jersey, New York, Pennsylvania, Virginia, and West Virginia. Links to resources for national audiences are provided from the March of Dimes, the Health Services and Resources Administration, Genetic Alliance, and the Save Babies Through Screening Foundation. Materials are available in English and Spanish, with items from Pennsylvania available in Chinese, French, Portuguese, Vietnamese, and Russian.

Contact: Wadsworth Center for Laboratories and Research, NYS Department of Health, Empire State Plaza, P.O. Box 509, Albany, NY 12201-0509, Telephone: (518) 474-2160 Web Site: http://www.wadsworth.org Available from the website.

Keywords: Childbirth education, Educational materials, Genetic screening, Midwifery, Midwives, Neonatal screening, Newborn infants, Spanish language materials

Hitti JE, Melvin AJ, Taylor P, Rhodes W, eds. 2016. Screening and management of maternal HIV infection: Implications for mother and infant (rev. ed.). Seattle, WA: University of Washington, Northwest Regional Perinatal Program and Department of Pediatrics; Olympia, WA: Washington State Department of Health, 40 pp.

Annotation: This handbook describes best practices to help with the continuing effort to prevent HIV infection in women and infants. Topics include HIV counseling and testing during pregnancy; perinatal transmission risk; diagnostic tests; Centers for Disease Control and Prevention's classification of disease; HIV reporting requirements; medications and treatment during pregnancy, labor, delivery and postpartum; newborn treatment; and consultation and referral information. Four appendices provide a resource directory, a listing of local health jurisdictions in Washington state, free regional and national telephone consultation resources, and Web sites. References conclude the handbook.

Contact: Washington State Department of Health, P.O. Box 47890, Olympia, WA 98504-7890, Telephone: (800) 525-0127 Secondary Telephone: (360) 236-4030 Web Site: http://www.doh.wa.gov Available from the website.

Keywords: Childbirth, Consultation, Counseling, Diagnostic tests, HIV, HIV screening, Labor, Medicine, Newborns, Perinatal care, Postpartum care, Pregnancy, Pregnant women, Referral, Resource materials, Women', s health

U.S. Government Accountability Office. 2016. Newborn screening timeliness: Most states had not met screening goals, but some are developing strategies to address barriers. Washington, DC: U.S. Government Accountability Office, 48 pp. (Report to congressional committees)

Annotation: This report examines (1) what is known about the timeliness of newborn screening for heritable conditions, and (2) barriers identified as contributing to screening delays and strategies to address them. Contents include a review of the Department of Health and Human Services' Advisory Committee on Heritable Disorders in Newborns and Children recommended timeframe goals for newborn screening, data provided by states, missing data and variations in data collection, and federal support for activities to improve data for future analysis such as by clarifying data definitions and working with states to help ensure they use the definitions when submitting timeliness data.

Contact: U.S. Government Accountability Office, 441 G Street, N.W., Washington, DC 20548, Telephone: (202) 512-3000 Secondary Telephone: E-mail: [email protected] Web Site: http://www.gao.gov Available from the website. Document Number: GAO-17-196.

Keywords: Barriers, Benchmarking, Data collection, Measures, Newborn screening, Program improvement, State programs, Statistical data, Technical assistance, Trends

Wilson K, Charmchi P, Dworetzky B. 2016. State statutes & regulations on dietary treatment disorders identified through newborn screening. Boston, MA: Catalyst Center, the National Center for Health Insurance and Financing for Children and Youth with Special Health Care Needs, 82 pp.

Annotation: This chart provides information about state-specific legislation that mandates the coverage of medically necessary foods by employer-sponsored health insurance, Medicaid, and coverage and related services funded by other state programs such as the Supplemental Food Program for Women, Infants, and Children (WIC); Title V; or relief funds. Contents include descriptions of medical foods products, abbreviations and definitions, a list of coverage types for dietary treatments of disorders identified through newborn screening, and a list of states that provide phenylketonuria (PKU) only coverage. Details about covered services and any benefit limits or age and income restrictions are included. [Funded by the Maternal and Child Health Bureau]

Contact: Catalyst Center, the National Center for Health Insurance and Financing for Children and Youth with Special Health Care Needs, Boston University School of Public Health, Center for Advancing Health Policy and Practice, 801 Massachusetts Avenue, Boston, MA 02218-2526, Telephone: (617) 638-1930 E-mail: [email protected] Web Site: https://ciswh.org/project/the-catalyst-center/ Available from the website.

Keywords: Access to health care, Diet therapy, Dietary assessment, Financing, Food supplements, Genetic disorders, Health insurance, Medicaid, Metabolic diseases, Newborn infants, Newborn screening, Nutrition, Phenylketonuria, Postnatal care, Regulations, Special health care needs, State legislation, State programs, Title V programs, Unfunded mandates, WIC program

U.S. Government Accountability Office. 2015. Prenatal drug use and newborn health: Federal efforts need better planning and coordination. Washington, DC: U.S. Government Accountability Office,

Annotation: This report provides information on how federal agencies have addressed opioid use by pregnant women and neonatal abstinence syndrome (NAS). Topics include federally funded research, federal programs, and other federal agency efforts related to prenatal opioid use or NAS; gaps identified by federal agency officials and experts in efforts to address prenatal opioid use or NAS; and how federal efforts to address prenatal opioid use or NAS are planned and coordinated.

Contact: U.S. Government Accountability Office, 441 G Street, N.W., Washington, DC 20548, Telephone: (202) 512-3000 Secondary Telephone: E-mail: [email protected] Web Site: http://www.gao.gov Available from the website.

Keywords: Analgesic drugs, Federal agencies, Infant health, Newborn infants, Prenatal influences, Prevention, Program coordination, Program development, Program planning, Referrals, Research, Screening, Substance use

Ramakrishnan M. 2014. Neonatal abstinence syndrome: How states can help advance the knowledge base for primary prevention and best practices of care. Arlington, VA: Association of State and Territorial Health Officials, 24 pp.

Annotation: This report describes opportunities to avert or ameliorate the outcome of neonatal abstinence syndrome (NAS) along a continuum of care spanning timeframes in the mother's and infant's life and the role of state health agencies. Topics include surveillance for NAS-affected infants and the sources of maternal opiate use; reimbursement for using screening protocols to detect substance abuse early in pregnancy and withdrawal signs in newborns; development of measures to ensure follow-up with opioid-dependent women and receipt of comprehensive services; and collaborative efforts to strengthen clinical standards for identification, management, and follow-up with NAS-affected infants and their families. A state index of resources is included.

Contact: Association of State and Territorial Health Officials, 2231 Crystal Drive, Suite 450, Arlington, VA 22202, Telephone: (202) 371-9090 Fax: (571) 527-3189 Web Site: http://www.astho.org Available from the website.

Keywords: Comprehensive health care, Intervention, Neonatal abstinence syndrome, Neonatal addiction, Newborn infants, Opiates, Population surveillance, Primary prevention, Screening, State health agencies, Substance use

Association of State and Territorial Health Officials. 2014. Improving newborn screening processes. Arlington, VA: Association of State and Territorial Health Officials, 1 p.

World Health Organization, United National Children's Fund. 2014. Every newborn: An action plan to end preventable deaths. Geneva, Switzerland: World Health Organization, Partnership for Maternal, Newborn, and Child Health, 55 pp.

Annotation: This action plan is based on epidemiology, evidence, and global and country learning, setting a framework to end preventable newborn deaths and stillbirths by 2035. Topics include information on existing commitments, rights, and the current situation; effective interventions for improving the health of newborns across the continuum of care; vision and goals; strategic objectives and principles; impact framework, coverage targets, measures of success, milestones, and core indicators; research priorities and coordination; and actions by constituency. A summary of the action plan process is included. The executive summary is available in English, French, and Spanish.

Contact: Partnership for Maternal, Newborn, and Child Health, World Health Organization, 20 avenue Appia, CH-1211, Geneva, Switzerland Telephone: +41 22 791 2595 Fax: +41 22 791 5854 E-mail: [email protected] Web Site: http://www.who.int/pmnch/en Available from the website.

Keywords: Community action, Early intervention, Fetal death, Health objectives, International health, Models, Neonatal screening, Newborn infants, Primary prevention

Association of Public Health Laboratories. (2013). Newborn screening: Four facts policymakers need to know. Silver Spring, MD: Association of Public Health Laboratories, 14 pp.

Annotation: This bochure describes the importance of newborn screening in the early detection of heritable and genetic conditions that may otherwise be hidden in infancy or early childhood. It outlines the history of newborn screening in the United States in the past 50 years, the importance of blood-spot samples from every newborn being screened by a laboratory, the public health success of newborn screening, the economic benefits of early detection of conditions, the success of pre-discharge hearing and heart screening, and the importance of evolving and improving newborn screening. The brochure contains tables describing the most common disorders screened for and partners in the screening process. It also provides several vignettes of people who were diagnosed with various conditions and were able to lead healthy lives because their conditions could be treated if diagnosed early.

Contact: Association of Public Health Laboratories, 8515 Georgia Avenue, Suite 700 , Silver Spring, MD 20910, Telephone: (240) 485-2745 Secondary Telephone: (240) 485-2747 Fax: (240) 485-2700 E-mail: [email protected] Web Site: http://www.aphl.org Available from the website.

Keywords: Blood tests, Genetic screening, Hearing tests, Neonatal screening, Newborn infants, Screening tests

Association of Public Health Laboratories. (2013). What's the best thing you can do to protect your newborn's health?: Newborn screening, 50 years - saving babies' lives. Silver Spring, MD: Association of Public Health Laboratories, 2 pp.

Annotation: This brochure explains the importance of newborn screening for new parents. It discusses national and state testing practices so that parents will know early about potential life threatening illnesses or disabilities to their baby.

Contact: Association of Public Health Laboratories, 8515 Georgia Avenue, Suite 700 , Silver Spring, MD 20910, Telephone: (240) 485-2745 Secondary Telephone: (240) 485-2747 Fax: (240) 485-2700 E-mail: [email protected] Web Site: http://www.aphl.org Available from the website.

Keywords: Consumer education materials, Neonatal screening, Newborn infants, Screening tests

Washington State Department of Health, Health Education Resource Exchange. 2013. Guidelines for testing and reporting drug exposed newborns in Washington state. Olympia, WA: Washington State Department of Health, Health Education Resource Exchange, 16 pp.

Annotation: This document provides guidance to hospitals, health care providers and affiliated professionals about maternal drug screening, laboratory testing, and reporting of drug-exposed newborns delivered in Washington State. Contents include indicators for testing, hospital policy, newborn and maternal risk indicators, consent issues for testing, newborn drug testing, management of a newborn with positive drug toxicology, and reporting to Children's Administration. Appendices include references and resources, guidelines for obtaining consent, a sample letter, neonatal abstinence syndrome scoring system, and information on Washington's Children's Administration prenatal substance abuse policy.

Contact: Washington State Department of Health, P.O. Box 47890, Olympia, WA 98504-7890, Telephone: (800) 525-0127 Secondary Telephone: (360) 236-4030 Web Site: http://www.doh.wa.gov Available from the website.

Keywords: Drug use during pregnancy, Guidelines, Hospital services, Infant health, Neonatal abstinence syndrome, Neonatal screening, Newborn infants, State initiatives, State social service agencies, Substance abusing pregnant women, Substance use screening, Washington

Association of Public Health Laboratories. 2013. The newborn screening story: How one simple test changed lives, science, and health in America. Silver Spring, MD: Association of Public Health Laboratories, 95 pp.

Annotation: This book traces the evolution of newborn screening over the last 50 years, with stories from families affected by newborn screening conditions and portraits of the health professionals who support the newborn screening system. Contents include an outline of the origins of newborn screening, health implications of test results and the impact on treatment, the role of science and laboratory testing, how policy contributes to provide newborn screening, and how future screening research, practices, and policies can help improve the survival and growth of newborn infants.

Contact: Association of Public Health Laboratories, 8515 Georgia Avenue, Suite 700 , Silver Spring, MD 20910, Telephone: (240) 485-2745 Secondary Telephone: (240) 485-2747 Fax: (240) 485-2700 E-mail: [email protected] Web Site: http://www.aphl.org Available from the website. Document Number: ISBN 978-0-9892398-0-6.

Keywords: Congenital abnormalities, History, Infant health, Neonatal mortality, Neonatal screening, Newborn infants

Association of State and Territorial Health Officials. 2013. Critical congenital heart disease. Arlington, VA: Association of State and Territorial Health Officials, 6 pp.

Annotation: This brief discusses screening newborns for critical congenital heart disease (CCHD), including the role of state and territorial health agencies, and sample state strategies from Indiana and New Jersey. Also provided are a map and chart showing which states have passed CCHD legislation or are considering it.

Contact: Association of State and Territorial Health Officials, 2231 Crystal Drive, Suite 450, Arlington, VA 22202, Telephone: (202) 371-9090 Fax: (571) 527-3189 Web Site: http://www.astho.org Available from the website.

Keywords: Barriers, Congenital heart defects, Heart diseases, Newborn screening, State initiatives

Taylor P, Bailey D, Green SR, McCully C, eds. 2012. Substance abuse during pregnancy: Guidelines for screening (rev. ed.). Olympia, WA: Washington State Department of Health, Maternal and Child Health, 50 pp.

Annotation: This booklet describes the role of health professionals in screening and identifying pregnant women with substance abuse issues. Contents include guidelines for screening and follow-up, sample screening tools, recommendations related to drug testing of pregnant women and newborns, and referral resources. [Funded by the Maternal and Child Health Bureau]

Contact: Health Education Resource Exchange, Washington State Department of Health, P.O. Box 47833, Olympia, WA 98504-7833, Telephone: (360) 236-3736 Fax: (360) 664-4500 E-mail: [email protected] Web Site: https://doh.wa.gov/about-us/topics-a-z/Health%20Education%20Resource%20Exchange Available from the website.

Keywords: Guidelines, Newborns, Pregnant women, Screening, Substance abuse, Substance abuse treatment services, Tests

Washington State Department of Health, Health Education Resource Exchange. 2012. Can your baby hear?: Your baby's first hearing test. Olympia, WA: Washington State Department of Health, Health Education Resource Exchange, 2 pp.

Annotation: This brochure explains to new parents the importance of newborn hearing screening and provides a form for recording testing results. It also contains milestones in the first year for parents to watch for to indicate normal speech, language, and hearing. Te brochure is available in English, Spanish, and Russian.

Contact: Washington State Department of Health, P.O. Box 47890, Olympia, WA 98504-7890, Telephone: (800) 525-0127 Secondary Telephone: (360) 236-4030 Web Site: http://www.doh.wa.gov Available from the website.

Keywords: Brochures, Consumer education materials, Hearing screening, Neonatal screening, Newborn infants, Non English language materials, Spanish language materials

Pickett OK, DeFrancis Sun B. 2012. Genetics: Professional resource brief (upd. ed.). Washington, DC: National Center for Education in Maternal and Child Health, multiple items.

Annotation: This brief is an electronic guide to recent resources on genetics and genomics; genetic testing, counseling, and disorders; and newborn screening. [Funded by the Maternal and Child Health Bureau]

Contact: National Center for Education in Maternal and Child Health, Georgetown University, Telephone: (202) 784-9770 E-mail: [email protected] Web Site: https://www.ncemch.org Available from the website.

Keywords: Genetic counseling, Genetic disorders, Genetic screening, Genetic services, Genetics, Genomics, Newborn screening, Resources for professionals, Testing

Genetic Alliance. [2011]. Baby's first test. [Washington, DC]: Genetic Alliance,

Annotation: This website provides information on newborn screening primarily for expecting and new parents. Resources are also available for prenatal and pediatric health professionals, including information about dried blood spot storage and usage. The content is based on 2008 legislation (the Newborn Screening Saves Lives Act) to expand support, research, and education opportunities for newborn screening. The website is organized as follows: About Newborn Screening (newborn screening facts, genetic and family history, screening resources, conditions screened by state); What to Expect (before birth, testing procedure, responding to results, testing outcomes, and what happens to the blood sample); Find a Condition; and Living with Conditions (family experiences, talking about a diagnosis, advocacy and support groups, finding a specialist, insurance and planning, looking to the future). [Funded by the Maternal and Child Health Bureau]

Contact: Genetic Alliance, 4301 Connecticut Avenue, N.W., Suite 404, Washington, DC 20008-2369, Telephone: (202) 966-5557 Secondary Telephone: (800) 336-GENE Fax: (202) 966-8553 E-mail: [email protected] Web Site: http://www.geneticalliance.org Available from the website.

Keywords: Blood tests, Educational materials, Family support, Genetic services, Newborn infants, Resources for professionals, Screening, Special health care needs

Russ S, Allen D, Fleischfresser S, Green C, White K, DesGeorges J, Aquino E, Errichetti K, Homer C. [2011]. Improving systems: Changing futures–Engaging Title V, families and clinical partners in improving the system of care for children and youth with special health care needs. [Boston, MA]: National Initiative for Children's Healthcare Quality, 56 pp.

Annotation: This report summarizes joint work undertaken by Title V, clinical teams, and families to improve state systems of care for children with epilepsy and for infants needing follow-up after newborn hearing screening using a quality improvement approach. The report describes the approach; aims, changes, and measures; lessons learned; change strategies; data collection; and the role of families in quality improvement. [Funded by the Maternal and Child Health Bureau]

Contact: National Institute for Children's Health Quality, 30 Winter Street, Sixth Floor, Boston, MA 02108, Telephone: (617) 391-2700 Secondary Telephone: (866) 787-0832 Fax: (617) 391-2701 E-mail: [email protected] Web Site: http://www.nichq.org Available from the website.

Keywords: Adolescents, Children, Community based services, Early intervention services, Education, Epilepsy, Families, Health care systems, National initiatives, Newborn hearing screening, Organizational change, Program improvement, Public health infrastructure, Quality assurance, Special health care needs, Statewide planning, Title V programs, Training, Young adults

Brazelton TB. 2011. Neonatal behavioral assessment scale (4th ed). London: Spastics International Medical Publications, 66 pp. (Clinics in developmental medicine, no. 50)

Nebraska Department of Health and Human Services, Newborn Screening Program. 2011. Newborn screening in Nebraska: Newborn screening for metabolic and inherited disorders and early hearing detection and intervention. Lincoln, NE: Nebraska Department of Health and Human Services, 40 pp.

Annotation: This annual report describes the Nebraska program for newborn screening for inborn errors of metabolism and inherited disorders. Contents include sections on major initiatives, process and output data, plans, continuing activities. Additional sections review the newborn hearing screening system and data as well as additional projects and summaries. [Funded by the Maternal and Child Health Bureau]

Contact: Nebraska Department of Health and Human Services, P.O. Box 95026, Lincoln, NE 68509-5026, Telephone: (402) 471-3121 E-mail: [email protected] Web Site: http://www.dhhs.ne.gov Available from the website.

Keywords: Genetic screening, Hearing screening, Nebraska, Neonatal screening, Newborn infants, State programs

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The MCH Digital Library is one of six special collections at Geogetown University, the nation's oldest Jesuit institution of higher education. It is supported in part by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under award number U02MC31613, MCH Advanced Education Policy with an award of $700,000/year. The library is also supported through foundation and univerity funding. 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.