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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 7 (7 total).

New Jersey Department of Health and Senior Services, Special Child, Adult, and Early Intervention Services. n.d.. Sickle cell disease: Information for school personnel (3rd ed.). Trenton, NJ: New Jersey Department of Health and Senior Services, Special Child Health and Early Intervention Services, 29 pp.

Annotation: This guide is meant to serve as a resource for school nurses and other school personnel to alert them to the signs and symptoms of complications of the sickle cell diseases and to educate them about what to do if they encounter a child with such signs and symptoms. The guide is divided into the following sections: (1) introduction, (2) what is sickle cell disease?, (3) warning signs, (4) what is sickle cell trait? (5) complications related to sickle cell disease, (6) medical management, (7) psychosocial issues, (8) the teacher, and (9) the social workers. The guide also includes the following appendices: (1) glossary, (2) bibliography, (3) New Jersey sickle cell/hemoglobinopathies treatment centers, and (4) New Jersey genetic centers for testing and family counseling.

Keywords: Child health, Genetic counseling, Genetic disorders, Genetic services, New Jersey, Patient care management, Psychosocial factors, School health services, Sickle cell disease, Sickle cell trait, Social workers, Teachers

National Center on Birth Defects and Developmental Disabilities, Division of Blood Disorders. [2011]. What you should know about sickle cell trait. Atlanta, GA: National Center on Birth Defects and Developmental Disabilities, Division of Blood Disorders, 2 pp.

Annotation: This fact sheet provides answers to frequently asked questions about sickle cell trait. It explains the differences between sickle cell trait and sickle cell disease; explains how someone acquires the trait and who is affected by it; explains the health complications that may result from having the trait; and describes the blood test that can determine whether or not someone has the trait. The fact sheet also provides statistics on the chances that a baby will acquire sickle cell trait, based on whether or not one or both parents have either the trait or the disease.

Contact: National Center on Birth Defects and Developmental Disabilities, 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/ncbddd Available from the website.

Keywords: Blood and lymphatic diseases, Consumer education materials, Screening tests, Sickle cell disease, Sickle cell trait

Secretary's Advisory Committee on Heritable Disorders in Newborns and Children. 2010. Screening U.S. college athletes for their sickle cell disease carrier status. Rockville, MD: U.S. Advisory Committee on Heritable Disorders and Genetic Diseases in Newborns and Children, 18 pp.

Annotation: This briefing paper outlines issues surrounding the screening of young athletes for their sickle disease carrier status (sickle cell trait), a genetic condition. The report discusses research findings and reports on health outcomes of individuals with sickle sell trait, public health implications of the National Collegiate Athletic Association rule on testing athletes for sickle cell trait, and recommendations. [Funded by the Maternal and Child Health Bureau]

Contact: U.S. Advisory Committee on Heritable Disorders in Newborns and Children, U.S. Maternal and Child Health Bureau, Parklawn Building, 5600 Fishers Lane, Rockville, MD 20857, Telephone: (301) 443-1080 Web Site: http://www.hrsa.gov/advisorycommittees/mchbadvisory/heritabledisorders/ Available from the website.

Keywords: Athletes, College students, Genetic disorders, Genetic screening, Public policy, Research, Sickle cell trait, Testing

Wisconsin Division of Public Health. 2008. Sickle cell trait [rev. ed.]. Madison, WI: Wisconsin Newborn Screening Laboratory, 2 pp.

Annotation: This brochure describes how sickle cell trait is different from sickle cell disease, and explains how it is genetically acquired. It also discusses genetic testing for the trait; offers guidance on talking with children who have the trait; and provides a list of organizations that can provide additional information on sickle cell trait and the newborn screening program in the state of Wisconsin.

Contact: Wisconsin Newborn Screening Laboratory, University of Wisconsin at Madison, 465 Henry Mall, Madison, WI 53706, Telephone: (608) 262-1293 Fax: (608) 262-3257 Web Site: http://www.slh.wisc.edu Available from the website.

Keywords: Genetic disorders, Genetic screening, Screening tests, Sickle cell trait, State programs, Wisconsin

Carey Consulting with Connecticut Comprehensive Sickle Cell Disease Consortium. 2007. Designing a comprehensive system across the life span: Connecticut's state plan to address sickle cell disease and trait. Hartford, CT: Connecticut Department of Public Health, 49 pp.

Annotation: This report discusses background information on sickle cell disease/trait along with sickle cell statistics from Connecticut. It reviews best practices for treatment and details a plan for Connecticut to address sickle cell disease/trait. [Funded by the Maternal and Child Health Bureau]

Contact: Connecticut Department of Public Health, 410 Capitol Avenue, Hartford, CT 06134-0308, Telephone: (860) 509-8000 E-mail: [email protected] Web Site: http://www.ct.gov/dph Available from the website.

Keywords: Connecticut, Health care systems, Planning, Sickle cell disease, Sickle cell trait, State programs, Systems development

Sadanandan S. [2006]. [Brooklyn Hospital Comprehensive Sickle Cell Disease and Newborn Screening Program: Final report]. Brooklyn, NY: Brooklyn Hospital Center, 48 pp.

Annotation: This report describes a project in Brooklyn, NY from 2002-2006 to broaden education, community-based screening and genetic counseling, and to increase the reach of at-risk community members who lack understanding of the impact of sickle cell disease upon their communities. Contents include an overview of the program needs and goals and objectives, progress to date, efforts in the communities, and the consortium and other collaborations. Appendices include questionnaires, sample forms and reports, processes, workshop questions and tests, and events held. [Funded by the Maternal and Child Health Bureau]

Contact: Brooklyn Hospital Center, Genetics Unit, 121 DeKalb Avenue, Brooklyn, NY 11201, Telephone: (718) 403-8032 Web Site: http://www.tbh.org/healthcare-services/reproductive-genetics

Keywords: Blacks, Community based services, Genetic screening, Hemoglobinopathies, Neonatal screening, New York, , Outreach, Sickle cell disease, Sickle cell trait

Shapiro BS, Schechter NL, Ohene-Frempong K, eds. 1994. Sickle cell disease related pain: Assessment and management—Conference proceedings. Mount Desert, ME: New England Regional Genetics Group, 53 pp.

Annotation: These proceedings discuss the assessment of pain, pharmacological management of pain, non-pharmacological management of pain, consumers' perspective on pain management, and discussions on these topics. [Funded by the Maternal and Child Health Bureau]

Contact: NERGG, Inc., P.O. Box 920288, Needham, MA 02492, Telephone: (781) 444-0126 Fax: (781) 444-0127 E-mail: [email protected] Web Site: http://www.nergg.org Available in libraries.

Keywords: Adverse effects, Analgesic drugs, Conference proceedings, Disease management, Pain, Sickle cell disease, Sickle cell trait

   

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.