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Strengthening the evidence for maternal and child health programs

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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 (22 total).

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: mcomeau@bu.edu Web Site: http://cahpp.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

March of Dimes Birth Defects Foundation. 2007. PKU. White Plains, NY: March of Dimes , (Preconception risk reduction)

Annotation: This web site provides information about phenylketonuria (PKU). It answers the following questions: (1) what is PKU?, (2) how does PKU affect a child?, (3) who gets PKU?, (4) are all infants tested for PKU?, (5) how is the test done?, (6) can PKU symptoms be prevented?, (7) what is maternal PKU? (8) what is new in PKU research?, and (9) are there additional sources of information? References are included.

Contact: March of Dimes, 1275 Mamaroneck Avenue, White Plains, NY 10605, Telephone: (914) 997-4488 Secondary Telephone: Web Site: http://www.marchofdimes.com Available from the website.

Keywords: Child health, Infant health, Maternal phenylketonuria, Mental retardation, Phenylketonuria, Prevention, Research, Treatment, Women's health

Georgia Division of Public Health, Georgia Newborn Screening Program. 2004. Georgia newborn screening manual for metabolic diseases and hemoglobinopathies. Atlanta, GA: Georgia Newborn Screening Program, Georgia Division of Public Health, 54 pp.

Annotation: This report describes the Georgia Newborn Screening Program, a program requiring that every live born infant have a blood test for nine metabolic disorders (phenylketonuria, congenital hypothyroidism, maple syrup urine disease, galactosemia, tyrosinemia, homocystinuria, congenital adrenal hyperplasia, biotinidase deficiency, medium-chain acyl-CoA dehydrogenase deficiency) and for sickle cell disorders. The report provides an overview of the program; discusses its screening, testing and reporting, and diagnostic activities; and describes its follow-up programs. Education resources are also included.

Contact: Maternal and Child Health Library at Georgetown University, Telephone: (202) 784-9770 E-mail: mchgroup@georgetown.edu Web Site: https://www.mchlibrary.org Available from the website.

Keywords: Biotinidase deficiency, Blood tests, Congenital adrenal hyperplasia, Congenital hypothyroidism, Diagnosis, Galactosemia, Georgia, Homocystinuria, Maple syrup urine disease, Metabolic diseases, Neonatal screening, Newborn infants, Phenylketonuria, Resource materials, Sickle cell disease, State programs, Tyrosinemia

Waisbren S. 2003. Maternal PKU resource mothers program: A clinical trial—[Final report]. Boston, MA: Children's Hospital Boston, 23 pp.

Annotation: This report evaluates a randomized controlled study using a specially designed home visitation program including resource mothers to help women with phenylketonuria (PKU) attain metabolic control prior to and throughout pregnancy in order to prevent the adverse effects of maternal PKU. Report sections include the nature of the research problem, goals and objectives, the study methodology, an evaluation, and a review of the results/outcomes. Also included is a list of publications and products, an outline of the dissemination/utilization of study results, and references. Tables provide additional information mothers' background variables, blood measurement variables, diet variables, and treatment plan assessment schedules. a review of the literature; an outline of the study design and methods; a presentation of findings; and a discussion of findings and recommendations for policy implications and further research. Also provided are a list of products developed and references.

Contact: Maternal and Child Health Library at Georgetown University, Telephone: (202) 784-9770 Contact Phone: (617) 355-4686 Contact Fax: (617) 355-7346 E-mail: mchgroup@georgetown.edu Web Site: https://www.mchlibrary.org Available from the website.

Keywords: Congenital abnormalities, Fetal development, Final reports, Genetic disorders, Intervention, MCH Research, Maternal fetal exchange, Maternal phenylketonuria, Nutrition, Pregnant women, Resource mothers

American Academy of Pediatrics. 2002. A compendium of resources on newborn screening policy and systems development. Elk Grove Village, IL: American Academy of Pediatrics, 61 pp.

Annotation: This compendium includes selected resources and abstracts on the following topics: (1) general newborn screening; (2) biotinidase deficiency, (2) congenital adrenal hyperplasia, (3) congenital hypothyroidism, (4) cystic fibrosis, (5) drug exposure, (6) galactosemia, (7) hearing screening, (8) hemoglobinapathies, (9) HIV, (10) medium chain co-A dehydrogenase deficiency, (11) phenylketonuria. Additional resources are provided on newborn screening policy; ethical, legal, and social issues; costs and financing of screening newborns; laboratory analysis; research and new technologies; and treatment and management. [Funded in part by the Maternal and Child Health Bureau]

Contact: National Resource Center for Patient/Family-Centered Medical Home, American Academy of Pediatrics, 345 Park Boulevard, Itasca, IL 60143, Telephone: (847) 434-7605 Secondary Telephone: (800) 433-9016, ext. 7605 Web Site: https://medicalhomeinfo.aap.org/Pages/default.aspx

Keywords: Biotinidase deficiency, Congenital adrenal hyperplasia, Congenital hypothyroidism, Cystic fibrosis, Drug affected infants, EPSDT, Ethics, Financing, Galactosemia, HIV, Hearing screening, Hemoglobinopathies, Laboratories, Legal issues, Management, Neonatal screening, Phenylketonuria, Research, Technology

National Institute of Child Health and Human Development and National Institutes of Health, Office of Medical Applications of Research. 2001. Report of the NIH Consensus Development Conference on Phenylketonuria (PKU): Screening and Management. Bethesda, MD: National Institute of Child Health and Human Development, 335 pp.

Annotation: This report provides information from the NIH Consensus Development Conference on Phenylketonuria (PKU) Screening and Management, including the consensus statement developed by the participants, abstracts of presentations made at the conference, and the report of the consensus development panel. Appendices provide additional information about PKU. [Sponsored in part by the Maternal and Child Health Bureau.]

Contact: Eunice Kennedy Shriver National Institute of Child Health and Human Development, Information Resource Center, P.O. Box 3006, Rockville, MD 20847, Telephone: (800) 370-2943 Secondary Telephone: Fax: (866) 760-5947 E-mail: NICHDInformationResourceCenter@mail.nih.gov Web Site: http://www.nichd.nih.gov

Keywords: Conferences, Genetic screening, Hereditary diseases, Interdisciplinary training, Metabolic diseases, Neonatal screening, Nutrition, Phenylketonuria, Research, Therapeutics

California Department of Health Services, Genetic Disease Branch. 1997. Cost and availability of dietary treatment of phenylketonuria (PKU): Report of a national survey. Berkeley, CA: California Department of Health Services, Genetic Disease Branch, ca. 200 pp.

Annotation: This survey discusses the costs of treating children with phenylketonuria (PKU), who need low protein formula and food products. A questionnaire was sent to parents of children with PKU, information about reimbursement was collected from private insurance companies, state health agencies were surveyed on their diet provision policies and applicable state laws, data on available dietary products was collected from manufacturers, and the costs of feeding a child with PKU were calculated using data on food costs from the U.S. Department of Agriculture. The survey ends with four appendices providing the parents' questionnaire, correspondence with the Health Insurance Association of America, state laws relating to a PKU diet, and an American Academy of Pediatrics statement. [Funded by the Maternal and Child Health Bureau]

Keywords: Child health, Child nutrition, Children with special health care needs, Costs, Diet therapy, Health policy, Metabolic diseases, Phenylketonuria

Horsley JW, Allen ER, Daniel PW. 1996. Nutrition management of school age children with special needs: A resource manual for school personnel, families, and health professionals = Nutrition management of handicapped and chronically ill school children: A resource manual for school personnel, families and health professionals. (2nd ed.). Richmond, VA: Virginia Department of Health and Virginia Department of Education, 93 pp.

Annotation: This manual, a product of an interagency project between the Virginia Departments of Health and Education, is a guide for parents and professionals on the management of nutrition problems of school children with special needs. It helps school personnel plan nutrition services for students who have special health needs or are chronically ill. The information included facilitates the management of special diets and the expansion of nutrition education in the school curriculum. It includes information on these topics: common nutrition problems and interventions during the school day; dietary considerations of specific conditions and related factors; and nutrition goals and objectives for the individualized education program. Dietary considerations and sources of information and/or nutrition education materials for the following conditions are discussed: cerebral palsy, cystic fibrosis, diabetes mellitus, Down syndrome, juvenile rheumatoid arthritis, phenylketonuria, seizure disorders, spina bifida, constipation, feeding abnormalities, and tube feeding. Nine case studies are presented. The appendix includes information on lunch menu ideas for special diets, nutritious snacks, textural modifications, arthritis diet and drugs, complications of tube feeding, and PKU diet free foods. [Funded by the Maternal and Child Health Bureau]

Contact: Maternal and Child Health Library at Georgetown University, Telephone: (202) 784-9770 E-mail: mchgroup@georgetown.edu Web Site: https://www.mchlibrary.org Available for loan. Document Number: HRSA Info. Ctr. MCHI113.

Keywords: Cerebral palsy, Children with special health care needs, Constipation, Cystic fibrosis, Diabetes mellitus, Down syndrome, Enteral nutrition, Epilepsy, Feeding disorders, Individualized education programs, Juvenile rheumatoid arthritis, Nutrition, Phenylketonuria, School food services, Spina bifida

Michals K. 1993. An Educational Behavioral Program for PKU [Final report]. Chicago, IL: University of Illinois at Chicago, 47 pp.

Annotation: Long-term dietary treatment of patients with phenylketonuria (PKU) is essential for optimal development and maintenance of intellectual ability. Children should be educated and adequately prepared to assume self-management of their treatment as they undergo physiological and psychosocial maturation. This study examined the effects of an experimental program that uses both an educational and a behavioral approach to accomplish dietary self-management by child and adolescent phenylketonuria patients. [Funded by the Maternal and Child Health Bureau]

Contact: National Technical Information Service, U.S. Department of Commerce, 5301 Shawnee Road, Alexandria, VA 22312, Telephone: (703) 605-6050 Secondary Telephone: (888) 584-8332 E-mail: customerservice@ntis.gov Web Site: http://www.ntis.gov Document Number: NTIS PB95-209516.

Keywords: Adolescents, Adolescents, Children with Special Health care Needs, Chronic Illnesses and Disabilities, Chronically Ill, MCH Research, Metabolic Disorders, Nutrition, Patient Education, Phenylketonuria, School Age Children, School-Age Children

Waisbren S. 1993. Study of Psychosocial Factors in Maternal Phenylketonuria [Final report]. Boston, MA: Boston Children's Hospital, 43 pp.

Annotation: Women with phenylketonuria (PKU) are at risk for bearing children with mental retardation and/or physical disabilities. Dietary treatment during pregnancy, if initiated prior to conception, offers protection to the fetus. Many women seek medical attention after they are pregnant, however. The investigators in this study posited that psychosocial factors determine when a young woman with PKU is likely to plan her pregnancy and comply with medical recommendations for treatment. This 3-year prospective longitudinal study tested these assumptions using a stage model of decision making. The findings clearly indicate that specific psychosocial factors predict adherence to medical recommendations in maternal PKU. The two most important factors were social support and positive attitudes toward treatment. [Funded by the Maternal and Child Health Bureau]

Contact: National Technical Information Service, U.S. Department of Commerce, 5301 Shawnee Road, Alexandria, VA 22312, Telephone: (703) 605-6050 Secondary Telephone: (888) 584-8332 E-mail: customerservice@ntis.gov Web Site: http://www.ntis.gov Document Number: NTIS PB95-209144.

Keywords: Birth Defects, Diabetes, High risk groups, High risk pregnancy, Mental Retardation, Nutrition, Phenylketonuria (PKU), Pregnant Women, Women

Hofman LF, ed. 1992. Proceedings: 9th National Neonatal Screening Symposium—Newborn screening: A partner in preventing infant mortality. Washington, DC: Association of State and Territorial Public Health Laboratory Directors, 376 pp.

Annotation: These are the proceedings of the 9th National Neonatal Screening Symposium, held April 7-11, 1992 in Raleigh, North Carolina. The symposium brings together practitioners, laboratory specialists, program managers, and medical consultants with an interest in this field. The proceedings include abstracts from oral presentations and poster presentations; some of the major topics covered included federal regulations applicable to the newborn laboratory, the role of newborn screening in preventing sudden infant death syndrome, quality assurance, information systems, screening for hemoglobinopathies, and issues related to PKU and galactosemia.

Contact: Association of State and Territorial Public Health Laboratory Directors, 1211 Connecticut Avenue, N.W., Suite 608, Washington, DC 20036, Telephone: (202) 822-5227 Price unknown.

Keywords: Conference proceedings, Federal government, Galactosemia, Hemoglobinopathies, Neonatal screening, Phenylketonuria, Regulations, SIDS

Pass K. 1989. Pilot Screening for Biotinidase Deficiency in Newborns [Final report]. Albany, NY: New York State Department of Health, 37 pp.

Annotation: The goal of this study was to evaluate screening for biotinidase deficiency for incorporation into the panel of newborn screening tests in New York State. It was recommended that Biotinidase deficiency demonstrates many of the requisites for inclusion in a newborn screening program for reasons including the assay is suitable for high-volume screening; the rate of false positives is low; no false negatives were identified; the frequency of biotinidase deficiency is within the frequency range of disorders in current screening programs; cases of biotinidase deficiency were identified in the three largest ethnic categories of the population; treatment and followup are simple, inexpensive, and effective; early intervention can prevent irreversible clinical sequelae which would otherwise lead to lifetime disability or early death. [Funded by the Maternal and Child Health Bureau]

Contact: National Technical Information Service, U.S. Department of Commerce, 5301 Shawnee Road, Alexandria, VA 22312, Telephone: (703) 605-6050 Secondary Telephone: (888) 584-8332 E-mail: customerservice@ntis.gov Web Site: http://www.ntis.gov Document Number: NTIS PB89-230817.

Keywords: Biotinidase Deficiency, Colorimetric Testing, Hypothyroidism, Metabolic Disorders, Neonatal Screening, Newborns, Phenylketonuria (PKU)

Levy H. 1987. Study of Maternal PKU and Hyperphenylalaninemia [Final report]. Boston, MA: Children's Hospital,

Annotation: The purpose of this study was to answer three major questions confronting young women with PKU, their families, and those involved in the care of PKU: (1) Does fetal damage occur at any level of maternal hyperphenylalaninemia or only when the mother has classic PKU?; (2) does control of the maternal biochemical abnormalities during pregnancy prevent fetal damage?; and (3) what type and degree of medical and social care and followup is necessary to ensure that women with PKU are given optimal advice and treatment in regard to childbearing? The project studied the effects of maternal phenylketonuria and hyperphenylalaninemia on 58 offspring from untreated pregnancies in 22 mothers who were identified by routine screening of umbilical cord blood. Based on the findings, the researchers concluded that it is likely that fetal damage from maternal phenylketonuria can be largely and perhaps entirely prevented by dietary therapy, but therapy must begin before conception for the best chance of a normal infant. The findings highlight the need for identification and followup of young women with PKU and the need for some kind of limited re-screening program or centralized registry so that women with PKU can be identified and educated regarding the risks of maternal PKU. [Funded by the Maternal and Child Health Bureau]

Contact: National Technical Information Service, U.S. Department of Commerce, 5301 Shawnee Road, Alexandria, VA 22312, Telephone: (703) 605-6050 Secondary Telephone: (888) 584-8332 E-mail: customerservice@ntis.gov Web Site: http://www.ntis.gov Document Number: NTIS PB88-173711.

Keywords: Hyperactivity, Mental retardation, Nervous system diseases, Phenylketonuria (PKU), Pregnant women, Women, Young women

Rodman D, Murphy A, eds. 1985. Proceedings: Perinatal Care In The 80's: Social Work Strategies for Prevention and Intervention. Waltham, MA: Eunice Kennedy Shriver Center, University Affiliated Training Program, 134 pp.

Annotation: The papers presented in these proceedings reflect areas of knowledge and practice which are applicable to the delivery of services to mothers and children, adolescents, and family units. Topics covered are comprehensive health planning in perinatal care; understanding principles of genetics; role of social work in genetics; substance abuse (alcohol, drugs, and tobacco); staff reflections on caring for drug addicted pregnant women; ethno/cultural factors and perinatal care; integration of Southeast Asians into a health care system; identification of mothers with medical and social risks; access to the health system for mothers and infants at risk; nutrition, psychosocial and medical aspects; and maternal phenylketonuria as a disease born of success.

Contact: Maternal and Child Health Library at Georgetown University, Telephone: (202) 784-9770 E-mail: mchgroup@georgetown.edu Web Site: https://www.mchlibrary.org Available from the website.

Keywords: Access to health care, Access to prenatal care, Adolescent health services, Asian Americans, Genetics, Health planning, High risk mothers, MCH services, Maternal phenylketonuria, Perinatal care, Social work, Sociocultural factors, Substance abuse, Substance abusing pregnant women

U.S. Maternal and Child Health Service. 1971. Recommended guidelines for PKU programs for the newborn. Rockville, MD: U.S. Maternal and Child Health Service, 12 pp.

Annotation: This booklet contains guidelines intended to represent the current (1971) state of experience and knowledge in regard to programs for the detection and care of newborn infants with phenylketonuria. The booklet is has two parts: developing a screening program and followup services for patients.

Keywords: Neonatal screening, Phenylketonuria

U.S. Maternal and Child Health Service. 1971. State laws pertaining to phenylketonuria as of November 1970. Rockville, MD: U.S. Maternal and Child Health Service, 53 pp. (Public Health Service publication: no. 2187)

Annotation: This is a compilation of legislation imposing some requirement on a variety of individuals and agencies to see that newborn infants are screen for Phenylketonuria and other inborn errors of metabolism. These materials is presented for informational purposes. [Funded by the Maternal and Child Health Bureau]

Keywords: Legislation, Phenylketonuria, Prevention

Anderson JA, Swaiman KF, eds. 1967, r1969. Phenylketonuria and allied metabolic diseases: Proceedings of a conference held at Washington, D.C. April 6-8, 1966. Washington, DC: U.S. Children's Bureau, 239 pp. (Children's Bureau publication; no. 3)

U.S. Children's Bureau. 1967. Proceedings of: International Conference on Inborn Errors of Metabolism, May 30-June 3, 1966, Dubrovnik, Yugoslavia. Washington, DC: U.S. Children's Bureau, 67 pp.

Annotation: The participants at the conference reported on their countries' efforts to detect inborn errors of metabolism and to develop treatment and management programs. Specific topics were clinical aspects of phenylketonuria and allied conditions, laboratory screening and diagnosis, proposed classification for hyperphenylalaninemia, screening tests for other congenital abnormalities, phenylketonuria as a public health responsibility in Maryland, and dietary management. It is a publication of the U.S. Children's Bureau.

Contact: Maternal and Child Health Library at Georgetown University, Telephone: (202) 784-9770 E-mail: mchgroup@georgetown.edu Web Site: https://www.mchlibrary.org Available from the website.

Keywords: Conferences, Congenital abnormalities, Diet therapy, Hyperphenylalaninemia, Laboratory techniques, Maryland, Metabolic diseases, Phenylketonuria, Screening tests

U.S. Children's Bureau. 1967. Recommended guidelines for PKU programs. [Washington, DC]: U.S. Children's Bureau, 12 pp.

Minnesota Department of Health. [1966]. Nutrition and the inherited diseases of man: As related to public health. Minneapolis, MN: Minnesota Department of Health, 198 pp.

Annotation: This book contains papers given at a conference held May 15-16, 1966. Topics covered include: genetics and nutrition; biochemical genetics; dietary management of phenylketonuria; principles of dietary therapy in hereditary metabolic disease; genetic factors in diabetes mellitus; genetics and nutrition in cystic fibrosis; serotonin deficiencies in relation to mental defect of phenylketonuria and galactosemia; genetics, a look to the future; and nutrition, a look to the future. [Funded by the U.S. Children's Bureau]

Keywords: Genetics, Nutrition, Phenylketonuria

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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.