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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: Thalassemia

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Displaying records 1 through 10 of 19 found.
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Bresnahan L, Giardina P, Koch D, Nyirady NM, Siegel RA, Walker KS. n.d.. Fun busters (?). New York: New York Hospital-Cornell Medical Center, Thalassemia Clinic, 37 pp.

Annotation: This booklet is a collection of games and puzzles designed to help children with thalassemia deal with and understand their condition and its treatment. Mazes, crossword puzzles, word games and other activities, along with answer keys, are included.

Keywords: Thalassemia

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Providence Ambulatory Health Care Foundation. n.d.. HGB E, anemia and basic genetics. Providence, RI: Providence Ambulatory Health Care Foundation, 1 videotape (VHS 1/2 inch).

Annotation: This videotape provides information on hemoglobin E, anemia, and basic genetics. It describes how genes are inherited, and kinds of health problems different kinds of hemoglobin cause (anemia and thalassemia). It is supplemented by three pamphlets: Questions about thalassemia, Questions about hemoglobin E, and Genetics—The story of genes. The tapes and pamphlets are available in English, Laotian, and Cambodian. [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 for loan.

Keywords: Anemia, Asian language materials, Consumer education materials, Genetics, Thalassemia, Videotapes

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Pearson HA, Berman LC, Crocker AC (Eds.). 1997. Thalassemia intermedia: A Region I conference. Arlington, VA: National Center for Education in Maternal and Child Health, 52 pp.

Annotation: These proceedings are from a conference sponsored by the New England Thalassemia Program held in Boston on November 14, 1996. They define thalassemia intermedia, present data from patients, discuss research at the National Institutes of Health on the use of sodium phenylbutyrate and hydroxyurea to stimulate fetal hemoglobin, and analyze the molecular basis of the disease. Other presentations deal with the assessment of iron overload, the use of chelation therapy, splenectomy, and infection control. Finally, there is a panel discussion about treatment approaches. The proceedings are published as a special issue of The Genetic Resource (vol 11, no. 2). [Funded by the Maternal and Child Health Bureau]

Contact: New England Thalassemia Program, Children's Hospital, 300 Longwood Avenue, Boston, MA 02115, Telephone: (617) 355-5943 Fax: (617) 355-7940 Price unknown. Document Number: ISBN 1-57285-041-8.

Keywords: Conference proceedings, Genetic disorders, Hematologic diseases, Thalassemia

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Wright L, Patton G. 1992. Aclarando sus dudas acerca de la anemia de celulas falciformes. Atlanta, GA: IG Laboratories, 168 pp.

Annotation: This book of illustrated lessons in Spanish is intended for a health care provider to use in educating parents of children with sickle cell disease about the cause, symptoms, and treatment of the disease. The pages are laid out so that when the book is folded open one side displays information for the parents and the other side displays more detailed information for the health care provider. The lessons explain the genetics of sickle cell trait; living with sickle cell anemia; other hemoglobinopathies; the risks of reproduction; and the various types of thalassemia.

Contact: IG Laboratories, Building A, Suite 150, 5775 Glenridge Drive, Atlanta, GA 30328, Telephone: (800) 255-2357 Price unknown.

Keywords: Parent education, Sickle cell disease, Spanish language materials, Thalassemia

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New England Regional Genetics Group. 1992. Thalassemia. Lowell, MA: Page One, 1 videotape (12:00 minutes English, other languages various times, VHS).

Annotation: This videotape is designed to tell Southeast Asian audiences about thalassemia before they have children. It shows children playing then a genetics counseling session with a young woman. It describes types of thalassemia, how it is inherited, how children are affected and treated, blood testing to determine if parents have the thalassemia trait, testing to see if an unborn infant has thalassemia, and choices parents can make about a pregnancy. The video is available in four versions, each with English plus a different Asian language (Hmong, Khmer, Lao, and Vietnamese). [Funded by the Maternal and Child Health Bureau]

Keywords: Asian language materials, Audiovisual materials, Consumer education materials, Genetics counseling, Thalassemia, Videotapes

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Berman LC, Crocker AC (Eds.). 1991. Thalassemia and Southeast Asians in New England: A regional conference. Washington, DC: National Center for Education in Maternal and Child Health, 61 pp.

Annotation: These proceedings include the presentations, discussions, and recommendations from a conference that brought together public health planners, health care providers, health educators, bilingual/bicultural human service workers, community and religious leaders, refugee service providers, and genetic counselors to explore in depth issues inherent in providing culturally sensitive and appropriate services to Southeast Asians at risk for thalassemia. Topics covered include Southeast Asian refugees in Massachusetts, testing for hemoglobinopathies in Southeast Asians, cultural perspective, hemoglobinopathy screen in an Asian health center, and Southeast Asian health center patient's knowledge and attitudes toward genetic services and thalassemia. [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 Photocopy available at no charge. Document Number: HRSA Info. Ctr. MCHE050.

Keywords: Asian Americans, Child health, Culturally competent services, Thalassemia

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Association of Asian Pacific Community Health Organizations. 1990. Thalassemia among Asians. Oakland, CA: Association of Asian Pacific Community Health Organizations, 2 pp.

Annotation: This educational brochure discusses what thalassemia is, how you get it, who inherits it, alpha and beta thalassemia disease, thalassemia trait, screening tests, and important facts for consumers. It was funded by the Maternal and Child Health Bureau and Office of Minority Health. It is available in English, Chinese, Korean, Laotian, Samoan, Tagalog, and Vietnamese. [Funded by the Maternal and Child Health Bureau]

Keywords: Asian Americans, Asian language materials, Patient education materials, Thalassemia

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Council of Regional Networks for Genetic Services. 199?-. CORN directory. Atlanta, GA: Council of Regional Networks for Genetic Services, annual.

Annotation: This directory lists the board of directors, administration, committees, committee chairs, liaisons, member organizations, and committees of the Council of Regional Networks for Genetic Services (CORN). An alphabetical listing of CORN members and affiliates is also included. [Funded by the Maternal and Child Health Bureau]

Keywords: Directories, Genetic screening, Hemoglobinopathies, Sickle cell disease, Thalassemia

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Fucharoen S, Rowley PT, Paul NW. 1987. Thalassemia: Pathophysiology and management, parts A and B. New York, NY: Alan R. Liss, 612 pp. (Birth defects: Original article series; v. 23, no. 5A, 5B)

Annotation: This report contains the proceedings of an international conference on thalassemia held in Bangkok, Thailand, June 30-July 3, 1985. General topics covered in volume A are: molecular biology and pathogenesis, pathophysiology, clinical manifestations and hematologic changes, cardiopulmonary defects and platelet function, hormones and minerals, and infection and immunology. Topics covered in volume B are: iron metabolism and chelation, pathology, general management, future trends in management, geographic distribution, and control.

Keywords: Hematologic diseases, Thalassemia

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University of California, Irvine Medical Center, Southeast Asian Genetics Program. 1987. Thalassemia. Orange, CA: University of California, Irvine Medical Center, Southeast Asian Genetics Program, 1 videotape.

Annotation: This videotape gives an overview of thalassemia's symptoms, why a person gets it, and treatment. It describes how blood normally works, and thalassemia's inadequate red blood cells. Early detection and treatment can control its effects, such as decreased bone growth. Human development from conception, and the dominant/recessive gene pattern are explained. It describes the benefits of genetic testing of parents and prenatal testing, and the test for thalassemia in the child. The narration is stilted. [Funded by the Maternal and Child Health Bureau]

Contact: University of California, Irvine, Southeast Asian Genetics Program, Building 29A, Second Floor, 101 The City Drive, Orange, CA 92668, Telephone: (714) 634-6966 Price unknown.

Keywords: Asian Americans, Audiovisual materials, Patient education materials, Thalassemia, Videotapes



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