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Strengthen the Evidence for Maternal and Child Health Programs

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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 9 (9 total).

Singh,P. n.d.. An Investigation of the Influence of G-6-PD Deficiency on Certain Hemoglobinopathies in a Comprehensive Health Care Project for Children and Youth [Final report]. Nashville, TN: Meharry Medical College, 5 pp.

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

Owens W. 2006. Education is the key to successful newborn screening follow-up, adolescent transitioning to adult care and understanding health care literacy: [Final report]. [Montgomery, AL]: Sickle Cell Foundation of Greater Montgomery, 184 pp., plus appendices.

Annotation: This report describes a three-year project to reach parents of newborns identified at birth as being carriers of sickle cell trait or having sickle cell disease, to provide follow-up counseling and improved access to appropriate educational information and needed care, and to provide continuing education to healthcare providers. The Great Montgomery, Alabama, program also offered services to eliminate significant impediments to adolescents with sickle cell disease and their parents during transition to adult healthcare. Report contents include a description of the project's purpose; issues and background information; an overview of methodologies; goals and objectives; and provides a summary of findings, conclusions, and recommendations. The appendix contains a variety of charts, statistical data, sample letters, surveys and testing documents; and other publications produced during the project. [Funded by the Maternal and Child Health Bureau]

Contact: Sickle Cell Foundation of Greater Montgomery, 3180 U.S. Highway 80 West, P.O. Box 9278, Montgomery, AL 36108, Telephone: (334) 286-9122 Fax: (334) 286-4804

Keywords: Adolescents, Alabama, Children, Final reports, Health literacy, Hemoglobinopathies, Parents, Program descriptions, Sickle cell disease

Coursey YL. 2006. Sickle Cell Foundation of Palm Beach County: Final report. West Palm Beach, FL: Sickle Cell Foundation of Palm Beach County, 8 pp., plus appendices.

Annotation: This report describes a project to strengthen and improve the follow-up, education, counseling, and coordination of care for families of infants who test positive for sickle cell disease or sickle cell trait. Report contents include descriptions of the population serviced in the five county region of Southeast Florida and barriers to service delivery, goals and objectives of the project, an outline of process measures, and a list of highlights of the project years 2003-2005. Appendices include books, booklets, and other handout informational materials for parents of children who tested positive for sickle cell disease/trait. Also included are a DVD and a VHS tape with a new born screening documentary video in English and Creole.

Contact: Sickle Cell Foundation of Palm Beach County, 1600 North Australian Avenue, West Palm Beach, FL 33407-5621, Telephone: (561) 833-3113 Fax: (561) 659-4505 Web Site: http://www.sicklecellpalmbeach.org

Keywords: Genetics education, Final reports, Florida, Genetic counseling, Genetic screening, Hemoglobinopathies, Local programs, Non English language materials, Sickle cell disease

American Academy of Pediatrics. 2002. A compendium of resources on newborn screening policy and systems development. Elk Grove Village, IL: American Academy of Pediatrics, 61 pp.

Annotation: This compendium includes selected resources and abstracts on the following topics: (1) general newborn screening; (2) biotinidase deficiency, (2) congenital adrenal hyperplasia, (3) congenital hypothyroidism, (4) cystic fibrosis, (5) drug exposure, (6) galactosemia, (7) hearing screening, (8) hemoglobinapathies, (9) HIV, (10) medium chain co-A dehydrogenase deficiency, (11) phenylketonuria. Additional resources are provided on newborn screening policy; ethical, legal, and social issues; costs and financing of screening newborns; laboratory analysis; research and new technologies; and treatment and management. [Funded in part by the Maternal and Child Health Bureau]

Contact: National Resource Center for Patient/Family-Centered Medical Home, American Academy of Pediatrics, 345 Park Boulevard, Itasca, IL 60143, Telephone: (847) 434-7605 Secondary Telephone: (800) 433-9016, ext. 7605 Web Site: https://medicalhomeinfo.aap.org/Pages/default.aspx

Keywords: Biotinidase deficiency, Congenital adrenal hyperplasia, Congenital hypothyroidism, Cystic fibrosis, Drug affected infants, EPSDT, Ethics, Financing, Galactosemia, HIV, Hearing screening, Hemoglobinopathies, Laboratories, Legal issues, Management, Neonatal screening, Phenylketonuria, Research, Technology

Hofman LF, ed. 1992. Proceedings: 9th National Neonatal Screening Symposium—Newborn screening: A partner in preventing infant mortality. Washington, DC: Association of State and Territorial Public Health Laboratory Directors, 376 pp.

Annotation: These are the proceedings of the 9th National Neonatal Screening Symposium, held April 7-11, 1992 in Raleigh, North Carolina. The symposium brings together practitioners, laboratory specialists, program managers, and medical consultants with an interest in this field. The proceedings include abstracts from oral presentations and poster presentations; some of the major topics covered included federal regulations applicable to the newborn laboratory, the role of newborn screening in preventing sudden infant death syndrome, quality assurance, information systems, screening for hemoglobinopathies, and issues related to PKU and galactosemia.

Contact: Association of State and Territorial Public Health Laboratory Directors, 1211 Connecticut Avenue, N.W., Suite 608, Washington, DC 20036, Telephone: (202) 822-5227 Price unknown.

Keywords: Conference proceedings, Federal government, Galactosemia, Hemoglobinopathies, Neonatal screening, Phenylketonuria, Regulations, SIDS

Association of State and Territorial Public Health Laboratory Directors. 1988-. Program and abstracts: __the National Neonatal Screening Symposium. Washington, DC: Association of State and Territorial Public Health Laboratory Directors, irregular.

Annotation: This volume contains the program and abstracts of papers given at the National Neonatal Screening Symposiums. These symposiums bring together practitioners, laboratory specialists, program managers, and medical consultants with an interest in this field. Some of the major topics covered by the symposiums include legal issues related to newborn screening, technical advances and automation, hemoglobinopathy screening practices, metabolic screening, endocrine screening disorders, access to care, and molecular biology and newborn screening. The volume also contains summaries of poster presentations made during the symposiums.

Contact: Association of State and Territorial Public Health Laboratory Directors, 1211 Connecticut Avenue, N.W., Suite 608, Washington, DC 20036, Telephone: (202) 822-5227 Price unknown.

Keywords: Access to care, Conference proceedings, Endocrine diseases, Hemoglobinopathies, Neonatal screening

Skeels MR, Buist NRM, Tuerck JM, eds. 1988. Proceedings: 6th National Neonatal Screening Symposium. McLean, VA: Association of State and Territorial Public Health Laboratory Directors, 198 pp.

Annotation: These are the proceedings of the 6th National Neonatal Screening Symposium, held May 22-25, 1988 in Portland, Oregon. The symposium brings together practitioners, laboratory specialists, program managers, and medical consultants with an interest in this field. Some of the major topics covered in the contributed papers include laboratory considerations, maternal and child health considerations, computerization, hemoglobin screening, and HIV screening. The "National Neonatal Screening Symposium: Program and Abstracts" are available in a separate volume.

Contact: Association of State and Territorial Public Health Laboratory Directors, 1211 Connecticut Avenue, N.W., Suite 608, Washington, DC 20036, Telephone: (202) 822-5227 Contact Phone: (703) 556-9222

Keywords: Conference proceedings, HIV, Hemoglobinopathies, Neonatal screening, Sickle cell disease

Kan YW, Reid CD, eds. 1980. Prenatal approaches to the diagnosis of fetal hemoglobinopathies: An international research workshop designed to update knowledge in prenatal diagnosis and laboratory methodologies of hemoglobinopathies, February 23-24, 1978. Bethesda, MD: National Institutes of Health, 259 pp.

Annotation: This report includes the presentations and discussions of the workshop on Prenatal Approaches to the Diagnosis of Fetal Hemoglobinopathies held in 1978 in Los Angeles. The document is divided into eight major subject areas, each containing presentations and discussion. These subject areas are: (1) fetoscopy; (2) placental aspiration; (3) biochemical methods; (4) immunologic methods; (5) cooperative efforts in data collection; (6) critical issues in prenatal diagnosis including ethical and legal issues, efforts to develop guidelines, the role of the community, and public policy; (7) future developments; and (8) the international roundtable.

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: NIHInfo@OD.NIH.GOV Web Site: http://www.nih.gov Available in libraries. Document Number: NIH 80-1529.

Keywords: Collaboration, Community role, Data collection, Ethics, Fetoscopy, Fetus, Guidelines, Hemoglobinopathies, Immunologic tests, International programs, Legal issues, Placenta, Prenatal diagnosis, Public policy, Reports, Research methodology, Screening

   

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.