Search Results: MCHLine

Annotation: This report provides a multidisciplinary look at the state of the science of genetics and teratology and identifies promising research questions for the future. It is divided into four basic sections of embryogenesis, later development, teratology and clinical genetics, and developmental immunology. The report is heavily clinical and technically detailed in nature, although a more general executive summary is also provided.

Contact: Eunice Kennedy Shriver National Institute of Child Health and Human Development, P.O. Box 3006, Rockville, MD 20847, Telephone: (800) 370-2943 Secondary Telephone: (888) 320-6942 Contact Phone: (301) 496-5097 Fax: (866) 760-5947 Web Site: https://www.nichd.nih.gov/Pages/index.aspx Available in libraries.

Keywords: Assessment, Evaluation, Genetic disorders, Genetics, Medical research, Teratology

Annotation: This document presents abstracts of presentations made at the National Conference on Peer Support Training held March 31-April 1, 1990 in Washington, D.C. Sessions covered an introduction to peer support, peer helping skills and knowledge base, and fundamentals of peer support training programs. [Funded by the Maternal and Child Health Bureau]

Contact: Maternal and Child Health Library at Georgetown University, E-mail: [email protected] Web Site: https://www.mchlibrary.org Available from the website. Document Number: HRSA Info. Ctr. MCHD029.

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Keywords: Conferences, Genetic disorders, Peer support programs, Training

Annotation: This resource guide was prepared for the National Conference on Peer Support Training held March 31-April 1, 1990 in Washington, D.C. The purpose of the guide is to place a collection of useful resources relevant to training peer helpers in the hands of both volunteers and professionals in genetic support groups who might be inspired to undertake the task of conducting a peer helper training program. Peer support implies a one-to one relationship between two people that involves sharing information, ideas, and experiences, offering support, and validating emotional responses. A peer helper is someone who has dealt with a crisis constructively or who is coping successfully with a chronic problem. The four sections of the resource guide include reviews of books, articles, and manuals related to training peer helpers, responses to a survey of of organizations with peer helper training programs, basic information about genetics, and additional sources of information related to genetic support groups and peer support. Additional funding for the peer support conference and the resource guide was provided by the March of Dimes Birth Defects Foundation and Roche Biomedical Laboratories. [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] Contact E-mail: [email protected] Web Site: http://www.geneticalliance.org Print copy available from the publisher. Document Number: HRSA Info. Ctr. MCHD028.

Keywords: Conferences, Genetic disorders, Peer support programs, Training

Annotation: This report contains major strategies and recommendations generated at the National Symposium on Genetic Services for Underserved Populations held May 7–9, 1989. The symposium was organized to promote maximum delivery of medical genetics services to persons for whom this care may be inaccessible because of ethnocultural distinctiveness, geographic isolation, language barriers, religious beliefs, personnel shortages, racial differences, or economic disadvantages. The first section of the report provides the consensus recommendations developed by the executive planning committee and plenary session chairs from the recommendations of the 30 workshop sessions. The second section lists the complete workshop recommendations. The symposium was sponsored by the Mid-Atlantic Regional Human Genetics Network, the March of Dimes Birth Defects Foundation, and the Maternal and Child Health Bureau in association with the National Center for Education in Maternal and Child Health. [Funded by the Maternal and Child Health Bureau]

Contact: Maternal and Child Health Library at Georgetown University, E-mail: [email protected] Web Site: https://www.mchlibrary.org Available from the website. Document Number: HRSA Info. Ctr. MCHC072.

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Keywords: Access to health care, Barriers, Cultural barriers, Culturally competent services, Financial barriers, Genetic disorders, Genetic services, Language barriers, Minority groups

Annotation: This book is the third publication presenting issues in genetics; it results from collaboration between the March of Dimes Birth Defects Foundation and the federal maternal and child health program. It contains the proceedings of a symposium held in Washington, D.C., in May 1989. The symposium was directed at special populations receiving inadequate health services, including genetic services. Participants recognized that the rapid growth of minority populations; the switch in sources of migration from western and southern Europe to Asia, Central America, and eastern Europe; religious differences; and economic disadvantage are among those factors contributing to underservice. The proceedings contain discussion of these and other issues and strategies and recommendations to overcome them. [Funded by the Maternal and Child Health Bureau]

Contact: Maternal and Child Health Library at Georgetown University, E-mail: [email protected] Web Site: https://www.mchlibrary.org Available from the website. Document Number: HRSA Info. Ctr. MCHD047.

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Keywords: Access to health care, Barriers, Cultural barriers, Culturally competent services, Financial barriers, Genetic disorders, Genetic services, Minority groups

Annotation: This report presents a blueprint to guide United States' policies regarding rare diseases. It details what the Commission recommends the private and public sectors should do to meet the needs of the millions of patients with rare diseases. The National Commission on Rare Diseases was established by Congress in August 1985 to assess the activities relating to various aspects of rare diseases. The assessed activities include basic and clinical research, the development and dissemination of information to health professionals and the public, availability of health insurance and reimbursement mechanisms for patients with rare diseases, and the discovery and development of orphan products. A ten-page executive summary and recommendations is also available.

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Keywords: Child health, Chronic illnesses and disabilities, Genetic disorders, Orphan drugs, Rare diseases

Annotation: This publication is based on the proceedings of the first national gathering of genetics support groups, in June 1985. It covers three themes: 1) skills for strengthening voluntary support groups (such as improving communication and publicity, fund raising, and involving clergy); 2) the emergence of self-help groups as a social resource; and 3) successful networking among genetics groups. [Funded by the Maternal and Child Health Bureau]

Keywords: Conference proceedings, Genetic disorders, Networking, Parent professional relations, Physician patient relations, Support groups

Annotation: This bibliography includes books, articles, and audiovisuals that help health professionals provide genetic services more effectively. Topics covered include adoption, chromosomal anomalies, clergy involvement and pastoral care, coping, decision making, disabilities and chronic illness, education, ethical and legal issues, family dynamics, genetic counseling, genetic screening, mourning and grieving, prenatal diagnosis, siblings, social work intervention, specific disorders, and support groups.

Contact: Maternal and Child Health Library at Georgetown University, E-mail: [email protected] Web Site: https://www.mchlibrary.org Available for loan; also available from the ERIC Document Reproduction Service, 7420 Fullerton Road, Suite 110, Springfield, VA 22153-2852. Telephone: (800) 443-ERIC / e-mail: [email protected] / website: http://edrs.com/; gopher://edrs.com. Document Number: HRSA Info. Ctr. MCHB256; ERIC ED 296 515.

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Keywords: Genetic counseling, Genetic disorders, Psychological factors, Social factors

Annotation: This directory provides a listing and description of mutual support groups concerned with the medical and psychosocial impacts of genetic disorders and birth defects on affected individuals and families. This directory is arranged according to categories of disorders, and contains an organizational index and subject index as well. This directory was superseded in 1992 by the "Directory of National Genetic Voluntary Organizations and Related Resources." [Funded by the Maternal and Child Health Bureau]

Contact: Maternal and Child Health Library at Georgetown University, E-mail: [email protected] Web Site: https://www.mchlibrary.org Available from the website. Document Number: HRSA Info. Ctr. MCHB359; MCHA372 (1987); ERIC ED 308 673 (1989), ED 266 563 (1985).

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Keywords: Child health, Directories, Genetic disorders, Support groups

Annotation: This bibliography provides a list of resources, types of organizations, teaching aids, curricula, and publications on human genetics and genetic disorders designed to help secondary school science teachers introduce human genetics education into their own curricula. [Funded by the Maternal and Child Health Bureau]

Contact: Maternal and Child Health Library at Georgetown University, E-mail: [email protected] Web Site: https://www.mchlibrary.org Photocopy available at no charge.

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Keywords: Directories, Educational materials, Genetics disorders, Genetics education, Resource materials, Secondary schools

Annotation: This publication is the proceedings of a conference held in Baltimore, Maryland, in April 1983. It provides discussions of these topics: educational needs of students and professionals in a variety of fields; patient and family needs; and advocacy issues.

Contact: Maternal and Child Health Library at Georgetown University, E-mail: [email protected] Web Site: https://www.mchlibrary.org Available in libraries.

Keywords: Conference proceedings, Congenital abnormalities, Genetic disorders

Annotation: This publication contains the summary of a workshop on the future directions of the National Genetics Program held in Rockville, Maryland, January 30-31, 1984.

Keywords: Conference proceedings, Genetic disorders, Genetic services, Program evaluation, Program planning

Annotation: This three volume set includes: Volume I: Genic, chromosomal and multifactorial errors; Volume II: Diagnostic screening and genetic counseling; and Vol III: Models of dysembryogenetic anomalies.

Keywords: Conference proceedings, Genetic counseling, Genetic disorders, Morbidity

Annotation: This book addresses some issues relating to genetics and medicine in the perspectives of the social and behavioral sciences. It provides viewpoints, especially bearing on impact of new genetic disease control methods and research data, as prototype, reporting psychological research conducted in connection with the California Tay-Sachs Disease Prevention Program. In this context, the authors consider how a specified population perceives genetic diseas and its consequences, levels of genetics knowledge, and attitudes toward the diagnosis, treatment, cure, and prevention of genetic illness. Additionally, the authors examine what these people think ought to be done in terms of genetic testing and screening, and what they are prepared to do, by way of specific intervention such as an abortion, in instances when a genetic disorder is diagnosed in utero. Finally, the authors consider the hypothesis of stigma by studying the attitudes and feelings of couples in which one member has been identified as a carrier of Tay-Sachs disease. The book includes two appendices: (1) questionnaire items and (2) follow-up interview items. References, an author index, and a subject index are included. [Funded by the Maternal and Child Health Bureau]

Contact: Sage Publications, 2455 Teller Road, Thousand Oaks, CA 91320-2218, Telephone: (805) 499-9774 Secondary Telephone: (800)818-7243 Fax: (805) 499-0871 E-mail: [email protected] Web Site: http://www.sagepub.com Available in libraries. Document Number: ISBN 0-8039-1055-X.

Keywords: Abortion, Behavior sciences, Diagnosis, Genetic disorders, Genetic screening, Prevention, Research, Social sciences, Tay Sachs disease, Treatment

Annotation: This document provides summaries of statutes and regulations on newborn screening for genetic disorders promulgated by individual states and the District of Columbia. The summaries are listed by state, and a chart shows specific conditions for which the states provide screening.

Keywords: Genetic disorders, Genetic screening, Neonatal screening, State legislation

Annotation: This book presents standards which are the framework for incremental improvement in community health status in the United States through preventive health service programming. The intended hallmark of these model standards is flexibility. The preamble spells out in detail the background, concepts, scope, definitions, and uses of the standards. The standards cover air quality, chronic disease control, communicable disease control, dental health, emergency medical services, family planning, food protection, genetic disease control, health education, home health services, housing services, injury control, institutional services, maternal and child health, noise control, nutritional services, occupational health, primary care, public health laboratory, radiological health, safe drinking water, sanitation, school health, solid waste management, surveillance and epidemiology, vector and animal control, and waste water management.

Keywords: Air pollution, Animals, Child health, Chronic illnesses and disabilities, Communicable diseases, Emergency medical services, Epidemiology, Family planning, Federal government, Food safety, Genetic disorders, Health education, Home care services, Housing, Injury prevention, Maternal health, Nutrition services, Occupational safety and health, Oral health, Population surveillance, Preventive health services, Primary care, Public health, Public health services, Radiation, Sanitation, School health, Standards, Water pollution

Annotation: This pamphlet reviews new developments in the screening of phenylketonuria since the 1966 publication of "Recommended Guidelines for PKU Programs for the Newborn" by the U.S. Department of Health, Education, and Welfare. The publication is intended primarily for those involved in the organization and regulation of screening as a service. Part 1 covers new developments, including ethical and legal issues, Part 2 contains recommendations for a central organization for screening, laboratory responsibilities, and phenylketonuria screening. Part 3 addresses test for other genetic-metabolic diseases.

Contact: Maternal and Child Health Library at Georgetown University, E-mail: [email protected] Web Site: https://www.mchlibrary.org Available from Hathitrust via participating libraries. Document Number: HRSA Info. Ctr. MCHB048.

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Keywords: Genetic disorders, Metabolic diseases, Neonatal screening, Screening

Annotation: These proceedings discuss acrocephalosyndactyly, craniofacial dysotosis, and related syndromes; genetic counseling clinics; minor anomalies as indicators of altered morphogenesis; biochemical aspects of handicapping conditions; biochemical screening; evaluation of screening procedures; what happens after screening; children and computers; prevention of mental retardation; fetal and neonatal assessment; newborn hearing screening; congenital dislocated hip in the Navajo Indian; mass computer evaluation of school children for heart disease; implications of screening techniques for comprehensive care; prevention of behavior disorders in early childhood; remediation of learning disabilities; poverty; and delivery of health services to children in the inner city.

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Keywords: Acrocephalosyndactylia, American Indians, Assessment, Behavior disorders, Biochemical genetics, Children, Computers, Congenital hip dislocations, Craniofacial abnormalities, Developmental screening, Diagnosis, Disabilities, Evaluation, Genetic counseling, Genetic screening, Health services delivery, Hearing screening, Heart diseases, Inner city, Learning disabilities, Mental retardation, Newborn infants, Poverty, Prevention

Annotation: This collection of reprints from the journal, Pediatrics, discusses screw caps for baby food jars, vitamin E in human nutrition, nutritional adequacy of infant formulas, vitamin D, lists of readings on feeding and nutrition for physicians and parents, factors affecting food intake, vitamin D intake and the hypercalcemic syndrome, prepared infant formulas, protection of the infant diet, public health nutrition services for children in the United States, a memorial of Robert R. Williams, vitamin B 6 requirements, compulsory testing of newborns for heredity metabolic disorders, national nutritional survey of preschool children, the absence of vitamin D in nonfat dry milk, nutritional management in hereditary metabolic disease, baby food as special dietary foods, proposed changes in Food and Drug Administration regulations concerning formula products and vitamin - mineral dietary supplements for infants, and the relation between infantile hypercalcemia and vitamin D.

Keywords: Child safety, Food and Drug Administration, Genetic screening, Hyperglycemia, Infant formula, Infant nutrition, Metabolic disorders, Nutrition surveys, Pediatrics, Public health nutrition, United States, Vitamin B 6, Vitamin D, Vitamin E

Annotation: This report consists of papers delivered at two symposia sponsored the University of Pennsylvania, the Journal of the American Physical Therapy Association, and the Children's Bureau of the U.S. Department of Health, Education, and Welfare. The report discusses children with central nervous system deficit, dual sensory role of muscle spindles, basic mechanisms of motor learning, postural integration at spinal levels, predisposing genetic and metabolic factors in developmental defects of the central nervous system, perinatal problems and the central nervous system, attitudinal reflex, normal motor development, variations and abnormalities of motor development, some considerations of muscle activity, plasticity of the nervous system of early childhood, mental retardation and the child with central nervous system deficit, patient evaluation, evaluation in the assessment of motor performance, tests and evaluation tools for the child with central nervous system deficit, cerebral palsy, physiology of sensation, and mechanisms in the control of movement. It is a publication of the U.S. Department of Labor, Children's Bureau.

Contact: Maternal and Child Health Library at Georgetown University, E-mail: [email protected] Web Site: https://www.mchlibrary.org Available from the website.

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Keywords: Assessment, Central nervous system diseases, Cerebral palsy, Children, Evaluation, Genetic disorders, Mental retardation, Metabolic diseases, Motor skills, Movement disorders, Neuromuscular diseases, Perinatal influences, Sensory impairments