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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 Library.

Search For: Keyword: Genetic disorders

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Displaying records 1 through 10 of 113 found.
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Jones S, Weiss JO. n.d.. A forum for nurses and social workers: Panel of families affected with a genetic disorder. Washington, DC: Georgetown University Child Development Center, 1 videotape (VHS 1/2 inch).

Annotation: This videotape is of a class from a continuing education program entitled Incorporation of Genetics into Clinical Practice: A Course for Nurses and Social Workers. The class features a panel of families affected by a genetic disorder. The teachers hope to increase awareness among nurses and social workers about the difficulties of genetic disorders.

Contact: Georgetown University Center for Child and Human Development, Georgetown University Box 571485, Washington, DC 20057-1485, Telephone: (202)687-5503 Secondary Telephone: (202)687-5000 Fax: (202) 687-8899 E-mail: gucdc@georgetown.edu Web Site: http://gucchd.georgetown.edu Price unknown.

Keywords: Audiovisual materials, Continuing education, Genetic disorders, Nurses, Professional education, Social workers, Videotapes

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American College of Medical Genetics. n.d.. Hearing loss, genetics, and your child. Bethesda, MD: American College of Medical Genetics, 2 pp.

Annotation: This brochure provides information for parents of children with hearing loss. The brochure discusses genetics and hearing loss; insurance and paying for genetic testing; what parents should do once hearing loss has been diagnosed; why it is important for children with hearing loss to be seen by a geneticist; how to prepare for the genetics appointment; and what happens at the appointment.

Contact: American College of Medical Genetics, 7220 Wisconsin Avenue, N.W., Suite 300, Bethesda, MD 20814, Telephone: (301) 718-9603 Fax: (301) 718-9604 E-mail: acmg@acmg.net Web Site: http://www.acmg.net/

Keywords: Children, Consumer education materials, Genes, Genetic disorders, Genetic screening, Genetic services, Genetics, Hearing disorders, Hearing screening, Hearing tests, Infants

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Centers for Disease Control and Prevention. n.d.. Fragile X Syndrome: Fact sheet. Atlanta, GA: Centers for Disease Control and Prevention, 2 pp.

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 30333, Telephone: (800) 232-4636 Secondary Telephone: (888) 232-6348 E-mail: cdc@cdcinfo.gov Web Site: http://www.cdc.gov Available from the website.

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

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Genetics in Primary Care Institute. 2014. A toolkit to improve care for pediatric patients with genetic conditions in primary care. Elk Grove Village, IL: Genetics in Primary Care Institute, 73 pp.

Annotation: This toolkit for primary care practices provides information and resources on identifying and caring for children and adolescents with genetic conditions. Topics include collecting family health history, identifying clients with suspected genetic conditions, and providing appropriate and coordinated care for clients with genetic conditions. Contents include action steps, communication tips, and additional resources. Examples from practices who participated in a quality improvement project are included. [Funded by the Maternal and Child Health Bureau]

Contact: Genetics in Primary Care Institute , National Center for Medical Home Implementation , c/o American Academy of Pediatrics , 141 Northwest Point Boulevard, Elk Grove Village, IL 60007, Telephone: (847) 434-7605 Secondary Telephone: (800) 433-9016, ext. 7605 Web Site: http://geneticsinprimarycare.org/Pages/default.aspx Available from the website.

Keywords: Adolescents with special health care needs, Children with special health care needs, Genetic counseling, Genetic disorders, Genetic history, Genetic screening, Pediatric care, Program coordination, Service integration

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Pickett OK, DeFrancis Sun B. 2012. Genetics: Resource brief (upd. ed.). Washington, DC: Maternal and Child Health Library at Georgetown University, 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: Maternal and Child Health Library at Georgetown University, Box 571272, Washington, DC 20057-1272, Telephone: (202) 784-9770 Fax: (202) 784-9777 E-mail: mchgroup@georgetown.edu Web Site: http://www.mchlibrary.org Available from the website.

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

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Centers for Disease Control and Prevention. 2011. What should you know about Fragile X Syndrome (FXS)?. Atlanta, GA: Centers for Disease Control and Prevention,

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 30333, Telephone: (800) 232-4636 Secondary Telephone: (888) 232-6348 E-mail: cdc@cdcinfo.gov Web Site: http://www.cdc.gov Available from the website.

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

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American College of Obstetricians and Gynecologists. 2011. Diagnostic tests for birth defects. Washington, DC: American College of Obstetricians and Gynecologists, 14 pp.

Annotation: This patient education brochure describes diagnostic tests that can be done to detect birth defects before a baby is born. It discuses different types of common birth defects, including those caused by missing, damaged, or extra chromosomes such Down syndrome and Trisomy 18, and disorders caused by defective genes such as sickle cell disease, cystic fibrosis, and Tay-Sachs. The brochure discusses types of tests, including carrier tests, screening tests, and diagnostic tests, and explains important factors to consider in deciding whether to have them. Diagrams illustrating the differences between amniocentesis and chorionic villus sampling are included, along with a glossary of terminology. The brochure also includes a table listing some of the inherited and chronosomal disorders that can be diagnosed before birth.

Contact: American College of Obstetricians and Gynecologists, 409 12th Street S.W., P.O. Box 96920, Washington, DC 20090-6920, Telephone: (202) 638-5577 Secondary Telephone: (202) 863-2518 E-mail: resources@acog.org Web Site: http://www.acog.org Single photocopies available at no charge; also available from the website.

Keywords: Congenital abnormalities, Genetic disorders, Pregnancy, Testing

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Save Babies Through Screening Foundation. 2011. One foot at a time: An introduction to newborn screening and what it can mean for your baby . [Cincinnati, OH]: Save Babies Through Screening Foundation, 1 DVD (16 min. 30 sec.).

Annotation: This video for parents and expectant parents, which is available in English and Spanish, present opinions of experts and parents on the newborn screening process. It depicts how screenings are conducted, what happens afterwards, and how newborn screening results are used. State screening policies are discussed, and parents' concerns about newborn screening are addressed. Resources for more information are provided.

Contact: Save Babies Through Screening Foundation, P.O. Box 42197, Cincinnati, OH 45242, Telephone: (888) 454-3383 E-mail: email@savebabies.org Web Site: http://savebabies.org Available at no charge; also available from the website.

Keywords: Consumer information materials, DVDs, Genetic disorders, Infant health, Multimedia, Neonatal screening, Prevention, Spanish language materials

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National Institute of Child Health and Human Development. 2010. Rett syndrome. Bethesda, MD: National Institute of Child Health and Human Development,

Annotation: This web site offers basic information about Rett syndrome, including what the syndrome is, what causes it, what can be done to treat it, and how information about the MECP2 gene affects girls with the syndrome.

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 Available at no charge; also available from the website.

Keywords: Consumer education materials, Developmental disabilities, Females, Genetic disorders, Research, Rett syndrome

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Fajnzylber E, Hotz VJ, Sanders SG. 2010. An economic model of amniocentesis choice. Cambridge, MA: National Bureau of Economic Research, 41 pp. (NBER working paper series no. 16306)

Annotation: This paper examines the logic behind the typical recommendation by medical practitioners that only pregnant women over the age of 35 be tested for Down syndrome and other genetic disorders using amniocentesis or chorionic villus sampling (CVS) since these tests can cause miscarriage. The authors argue that such logic is incomplete, since the cost of such testing rises with age, just as the benefit does: While undergoing an amniocentesis always entails the risk of miscarriage of a healthy fetus, these costs are lower at early ages, because there is a higher probability of being able to replace a miscarried fetus with a healthy birth at a later age. In this paper, the authors present an economic model of amniocentesis choice to explore this tradeoff.

Contact: National Bureau of Economic Research, 1050 Massachusetts Avenue, Cambridge, MA 02138-5398, Telephone: (617) 868-3900 Fax: (617) 868-2742 E-mail: info@nber.org Web Site: http://www.nber.org Available from the website.

Keywords: Amniocentesis, Chorionic villi sampling, Cost effectiveness, Economic factors, Genetic disorders, Genetic screening, Guidelines, Maternal age, Prenatal screening

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