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| Strengthening Newborn Screening in the Middle East and North Africa November 13-15, 2006 Supplemental Resources Regional Public Health Issues
Newborn Screening
Specific Diseases
Technologies
Education and Advocacy
Infrastructure
Research Grants and Training
Registries
Please note that, to conserve space, many abbreviations and acronyms are not spelled out in the list below. You can visit the abbreviations and acronyms page for a full listing. Regional Public Health Issues - Teebi AS, El-Shanti HI. (2006). Consanguinity: implications for practice, research, and policy. Lancet, 367(9515), 970-1. View the PubMed entry for this article
- Center for Arab Genomic Studies (U.A.E.) - Provides information on genetics in the Arab population, including information about genetic disorders and the importance of early diagnosis, as well as downloads of reports on genetic disorders in the Arab world.
- Bouazzaoui, LN. (1994). Consanguinité et santé publique au Maroc. Bull Acad. Natle. Med., 178(6), 1013-1027. View the PubMed entry for this article
top Newborn Screening - Advisory Committee on Heritable Disorders and Genetic Diseases in Newborns and Children, MCHB/ HRSA - Advises and guides the Secretary, DHHS, regarding the most appropriate application of universal newborn screening tests, technologies, policies, guidelines and programs for effectively reducing morbidity and mortality in newborns and children having or at risk for heritable disorders.
- Newborn screening: Toward a uniform screening panel and system, MCHB/HRSA/DHHS - This report developed standardized criteria to determine for which conditions to screen and provides recommendations for state-based newborn screening programs in the United States.
- Newborn Screening ACT Sheets and Confirmatory Algorithms, American College of Medical Genetics - Action plans, links to additional resources, and information on how professionals can communicate with parents whose newborn has tested positive for a disorder. Algorithms outline the steps taken to determine a conclusive diagnosis.
- A Look at Newborn Screening: Today and Tomorrow, American Academy of Pediatrics. Supplement to Pediatrics, May 2006, Volume 117. Issue 5. (Subscription Required)
- Van Dyck PC, Edwards, ES. (2006). A look at newborn screening: today and tomorrow. Supplement to Pediatrics. 2006; 117: 193. View PubMed entry for this article
- International Society of Neonatal Screening (ISNS) – General ISNS guidelines for starting a neonatal screening program, European regional consensus guidelines on a number of practical issues, the ISNS lexicon of terms, and the ISNS minimum data set.
- Newborn Screening and Genetics, Association of Public Health Laboratories - Works to strengthen public newborn screening laboratories in the United States and internationally by partnering with government health agencies and providing technical assistance to build capacity in laboratory management and quality control issues.
- CDC Newborn Screening Quality Assurance Program - Provides comprehensive quality assurance services for dried-bloodspot testing at newborn screening laboratories (US and international).
top Specific Diseases - Screening of newborns for congenital hypothyroidism - Guidance for Developing Programs, International Atomic Energy Agency - Comprehensive guidelines on how to develop a sustainable congenital hypothyroidism screening program. Outlines newborn screening principles and highlights practical issues in developing and implementing a screening system.
- Genetic and Rare Diseases Information Center, NIH Office of Rare Diseases/DHHS – Provides resources for questions regarding genetic and rare diseases.
- Genetics Home Reference, National Library of Medicine/NIH/DHHS - A guide to genetic conditions and basic explanations of genes and chromosomes related to genetic disorders.
- Newborn Screening for Cystic Fibrosis, CDC/DHHS - Documents results and recommendations from a workshop on assessing benefits and risks of newborn screening for cystic fibrosis.
- National Organization for Rare Disorders - Provides a database to search for reports and articles on rare diseases.
- Bailey, DB. (2004). Newborn Screening for Fragile X. Men Ret Dev Dis Res Rev, 10, 3-10. View the PubMed entry for this article
- Bailey, DB Jr.; Skinner, D; & Warren SF. (2005). Newborn screening for developmental disabilities: Reframing presumptive benefit. Am J Public Health, 95, 1889-1893. View the PubMed entry for this article
top Technologies - A Pandor, et al. (2004). Clinical effectiveness and cost-effectiveness of neonatal screening for inborn errors of metabolism using tandem mass spectrometry: A systematic review. Health Technology Assessment, 8(12). View publication project details
top Education and Advocacy - ORPHANET - Database dedicated to information on rare diseases and orphan drugs. It aims to improve management and treatment of genetic, auto-immun, or infectious rare diseases, rare cancers, or not yet classified rare diseases.
- March of Dimes - Aims to improve infant health by preventing birth defects and genetic conditions, provides community services, educates the public, and acts as advocates.
- Genetic Alliance – Empowers those affected by genetic disorders and builds the capacity of genetic advocacy organizations. Advocates for new technologies, increased funding for translational research and improved access to genetic services.
- International Genetic Alliance – Voices the interests of parent and patient organizations with an interest in genetics and biotechnology.
- National Coalition for Health Professional Education in Genetics – Works to educate healthcare professionals about genetic disorders and emerging advances in the field.
top Infrastructure top Research Grants and Training top Registries top Back to Strengthening Newborn Screening main page Back to Partnership for Sustainable Newborn Screening Home |
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