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Strengthen 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 6 (6 total).

National Institute of Child Health and Human Development. 2001, reprinted 2003. Genetics and fetal antecedents of disease susceptibility. Rockville, MD: National Institute of Child Health and Human Development, 17 pp. (From cells to selves)

Annotation: This publication discusses the interaction of the genotype with socioeconomic, environmental, and psychological factors in the fetal and postnatal environment that contribute to an individual's health or susceptibility to disease. Report contents include the strategic planning process, goals and objectives, scope of the plan, scientific context and opportunities, research priorities, infrastructure priorities, and priority methodology and policy issues. The appendix includes the roster of advisors.

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: [email protected] Web Site: http://www.nichd.nih.gov Available from the website.

Keywords: Congenital abnormalities, Environmental health, Genetics, Hereditary diseases, Morbidity, Mortality, Patient education materials, Psychological needs, Socioeconomic factors

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: [email protected] Web Site: http://www.nichd.nih.gov

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

Weiss JO, Mackta JS. 1996. Starting and sustaining genetic support groups. Baltimore, MD: Johns Hopkins University Press, 153 pp.

Annotation: This book discusses why people seek self-help organizations in general and genetic support groups in particular, then explains how to organize a genetic support group, how to sustain the group, and how to organize peer support training programs. Specific topics include finding a leader, developing educational materials and newsletters, conducting a meeting, and fundraising. Sample documents are included. It also contains a list of known genetic voluntary organizations, additional resources, and a glossary. The book is intended for lay people and professionals, including families with a genetic disorder, genetic counselors, physicians, and geneticists.

Keywords: Hereditary diseases, Manuals, Support groups

Corfman E, ed. 1979. Families today: A research sampler on families and children—Mental illness in the family. Rockville, MD: National Institute of Mental Health, 1 v. (Science monographs (National Institute of Mental Health (U.S.)); 1 [excerpts])

Annotation: This book contains these chapters from Science Matters 1, vols 1 and 2: depression and low-income, female-headed families; the mentally ill at home as a family matter; heredity and mental illness; poor family communication and schizophrenia; detection and prevention of childhood depression; new light on autism and other puzzling disorders of childhood; and basic training for parents of psychotic children.

Keywords: Autism, Children, Depression, Families, Hereditary diseases, Low income groups, Mental disorders, Schizophrenic disorders

US. Department of Health, Education, and Welfare, Children's Bureau . 1964. The clinical team looks at Phenylketonuria. Washington, D.C.: US. Department of Health, Education, and Welfare, Children's Bureau , 56 pp.

Annotation: This report discusses various aspect of Phenylketonuria (PKU)--an inherited disorder that increases the levels of a substance called phenylalanine in the blood and can result in severe mental retardation if left untreated. The report describes the biochemical and pediatric aspects of PKU; psychological and nutritional aspects; and family attitudes toward the restrictive low Phenylalanine diet that can minimize or prevent brain damage. Early detection is emphasized, and descriptions of screening tests for PKU snd Phenalyalanine-restricted diets and menus are included.

Contact: Google Books, Web Site: http://www.books.google.com

Keywords: Child nutrition, Children with special health care needs, Diet therapy, Genetic screening, Hereditary diseases, Neonatal screening, Phenylketonuria

Guest, GM, Berry, H, Rubinstein, JH. 1962. Management of newborn siblings of patients with Phenylketonuria or Galactosemia . [Washington, D.C.]: Department of Health, Education, and Welfare, 15 pp.

Annotation: This research summary addresses the management of newborn siblings of patients with phenylketonuria (PKU) or galactosemia, both of which are associated with severe mental retardation if left untreated. The summary includes recommendations for the management of newborn infants who may have one of these hereditary metabolic disorders, and diagnostic procedures for newborn siblings born into families known to have PKU or galactosemia. Based on questionnaire responses from physicians in the U.S., Great Britain, Ireland, and Germany, the summary includes a table listing preventable forms of mental retardation and recommended treatment for each of the diseases.

Contact: HathiTrust Digital Library, University of Michigan, Telephone: (734) 764-8016 E-mail: [email protected] Web Site: https://www.hathitrust.org/digital_library Available from Hathitrust via participating libraries.

Keywords: Disease prevention, Galactosemia, Hereditary diseases, Mental retardation, Metabolic diseases, Phenylketonuria
   

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.