Search Results: MCHLine

Annotation: This fact sheet provides an overview of Fragile X syndrome (FXS). It describes what Fragile X is; explains what causes it; and discusses the conditions that are common among children with Fragile X. It also lists some of the signs of FXS and explains what parents should do if they think their child has FXS. One side of the fact sheet is in English and the other is in Spanish.

Contact: Centers for Disease Control and Prevention, 1600 Clifton Road, Atlanta, GA 30329-4027, Telephone: (800) 232-4636 Secondary Telephone: (888) 232-6348 E-mail: [email protected] Web Site: http://www.cdc.gov Available from the website.

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Keywords: Consumer education materials, Disabilities, Fragile X syndrome, Genetic disorders, Spanish language materials

Annotation: This website provides information on the genetic disorder Fragile X Syndrome. It explains what causes it and how it is inherited; provides links to data, statistics, and articles; and discusses associated disorders and related concerns. It includes links to an online video illustrating what causes the disorder; an audio podcast about the importance of family history; free consumer education materials that can be downloaded from the website; and links to nonprofit organizations and agencies that focus on Fragile X Syndrome and related topics.

Contact: Centers for Disease Control and Prevention, 1600 Clifton Road, Atlanta, GA 30329-4027, Telephone: (800) 232-4636 Secondary Telephone: (888) 232-6348 E-mail: [email protected] Web Site: http://www.cdc.gov Available from the website.

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Keywords: Consumer education materials, Data, Fragile X syndrome, Genetic disorders, Resource materials, Statistics

Annotation: This report describes the research goals of the working groups convened in 2008 by the National Institutes of Health (NIH) to develop comprehensive recommendations for specific, high-priority research objectives for Fragile X Syndrome (FXS) and the associated disorders of Fragile X-associated Tremor/Ataxia Syndrome (FXTAS) and Fragile X-associated Primary Ovarian Insufficiency (FXPOI). The report provides an overview of these disorders; describes current research taking place at NIH; and lists research priorities recommended by the working groups to guide future collaborative and directed efforts regarding FXS, FXTAS, and FXPOI. A selected bibliography of Fragile X research supported by NIH is included as an appendix.

Contact: National Institutes of Health, 9000 Rockville Pike, Bethesda, MD 20892, Telephone: (301) 496-4000 Secondary Telephone: (301) 402-9612 Fax: (301) 496-0017 E-mail: [email protected] Web Site: http://www.nih.gov Available from the website.

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Keywords: Federal initiatives, Fragile X syndrome, Genetic disorders, Goals, Research

Annotation: The fragile X syndrome, the most prevalent inherited form of mental retardation, is preventable by prenatal testing. Prenatal diagnosis is not yet widely available because the testing is technically difficult and is not 100 percent reliable. The goal of this project was to develop a more reliable prenatal test. [Funded by the Maternal and Child Health Bureau]

Contact: National Technical Information Service, O.S. Department of Commerce, 5301 Shawnee Road, Alexandria, VA 22312, Telephone: (703) 605-6050 Secondary Telephone: (888) 584-8332 E-mail: [email protected] Web Site: http://www.ntis.gov Document Number: NTIS PB2000-106930.

Keywords: Fragile X Syndrome, MCH Research, Mental Retardation, Pregnant Women, Pregnant women, Prenatal Diagnosis, Research

Annotation: These proceedings include contributions on the following psychosocial aspects of genetic counseling: process issues; cross-cultural issues; decision making in the context of genetic risk; the reproductive decision-making process after genetic counseling; support in decision making processes in the post-counseling period; reproductive choices in couples at risk for genetic disease; a protocol to address the depressive effects of abortion for fetal abnormalities discovered prenatally via amniocentesis; psychosocial intervention strategies for professionals; genetic counseling and mental retardation; Prader-Willi syndrome; pitfalls in counseling for predictive testing in Huntington disease; hemophilia and the use of genetic counseling and carrier testing within family networks; psychological implications of genetic screening; and lay conceptions of genetic disorders.

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

Keywords: Abortion, Albinism, Fragile X syndrome, Genetic counseling, Genetic counselors, Genetic disorders, Genetic screening, Huntingtons disease, Neurofibromatosis, Prader Willi syndrome, Prenatal diagnosis, Psychosocial factors

Annotation: This report contains two sections. Section one describes developmental issues of concern in 1985: Serious viral infection in persons with developmental disabilities, issues of technological intervention for children with disabilities; community based services for chronically ill or disabled children and their families; and fragile-X syndrome. Section two contains examples of linkages between university affiliated programs and state and local programs and the training needs of state programs.

Keywords: Children with special health care needs, Chronic illnesses and disabilities, Communicable diseases, Fragile X syndrome, Medically fragile children, Program planning, Technology dependence