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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 1 (1 total).

Genetic Alliance. 2009. Newborn screening summit: Envisioning a future for newborn screening. Washington, DC: Genetic Alliance,

Annotation: This web resource provides information from the 2009 Newborn Screening Summit held on December 7-8, 2009, in Bethesda, Maryland. Summit topics included family perspectives; technology; information and risk communication; advocacy; storage and use of residual blood spots; decision-making in public, population, and private health; childhood screening; effective follow-up; health information exchange; the newborn screening system clearinghouse, portal, and transitional network; pros and cons of consent; benefit in newborn and childhood screening; defining abnormal; and strategic thinking about newborn screening. The site provides links to the summit agenda, a webcast recording, and materials.

Contact: Genetic Alliance, 4301 Connecticut Avenue, N.W., Suite 404, Washington, DC 20008-2369, Telephone: (202) 966-5557 Secondary Telephone: (800) 336-GENE Fax: (202) 966-8553 E-mail: [email protected] Web Site: http://www.geneticalliance.org Available from the website.

Keywords: Advocacy, Children, Communication, Conference proceedings, Consent, Decision-making, Families, Health, Infants, Neonatal screening, Public health, Screening, Technology
   

The MCH Digital Library is one of six special collections at Geogetown University, the nation's oldest Jesuit institution of higher education. It is supported in part by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under award number U02MC31613, MCH Advanced Education Policy with an award of $700,000/year. The library is also supported through foundation and univerity funding. 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.