Seminars in Perinatology
Volume 34, Issue 2 , Pages 121-124 , April 2010

From Developing Guidelines to Implementing Legislation: Actions of the US Advisory Committee on Heritable Disorders in Newborns and Children Toward Advancing and Improving Newborn Screening

  • R. Rodney Howell

      Affiliations

    • Leonard M. Miller School of Medicine, University of Miami, Miami, FL
  • ,
  • Michele A. Lloyd-Puryear

      Affiliations

    • Secretary's Advisory Committee on Heritable Disorders in Newborns and Children, US Department of Health and Human Services, Rockville, MD
    • Corresponding Author InformationAddress reprint requests to Michele A. Lloyd-Puryear, Health Resources and Services Administration, MCHB, US Department of Health and Human Services, 5600 Fishers Lane, Rockville, MD 20857

References 

  1. American Academy of Pediatrics, Newborn Screening Task Force. Serving the family from birth to the medical home (Newborn screening: a blueprint for the future—A call for a national agenda on state newborn screening programs). Pediatrics. 2000;106:389–427
  2. H.R. 4365. Children's Health Act of 2000. http://www.govtrack.us/congress/bill.xpd?bill=h106-4365Accessed November 3, 2009
  3. Advisory Committee on Heritable Disorders in Newborns and Children. http://www.hrsa.gov/heritabledisorderscommittee/Accessed November 3, 2009
  4. The Library of Congress. http://thomas.loc.gov/cgi-bin/bdquery/z?d110:SN01858:@@@D&summ2=3&Accessed November 3, 2009
  5. President's Council on Bioethics on Newborn Screening. http://www.bioethics.gov/reports/newborn_screening/index.htmlAccessed November 3, 2009
  6. Letter to the Secretary, U.S. Department of Health and Human Services. http://www.hrsa.gov/heritabledisorderscommittee/correspondence/sep2005letter.htmAccessed November 3, 2009
  7. Watson MS, Mann MY, Lloyd-Puryear MA, et al. Newborn screening: toward a uniform screening panel. Genet Med. 2006;8:S1–S252
  8. National Newborn Screening and Genetics Resource Center. http://genes-r-us.uthscsa.edu/Accessed November 3, 2009
  9. Green NS, Rinaldo P, Brower A, et al. Committee Report: advancing the current recommended panel of conditions for newborn screening. Genet Med. 2007;9:792–796
  10. Calonge N, Green NS, Rinaldo P, et al; Advisory Committee on Heritable Disorders in Newborns and Children. Committee Report: Methods for Evaluating and Making Recommendations for Conditions Nominated for Screening. (in press)
  11. Advisory Committee on Heritable Disorders in Newborns and Children. Committee Report. http://www.hrsa.gov/heritabledisorderscommittee/reports/Accessed November 3, 2009
  12. Kemper AR, Boyle CA, Aceves J, et al. Long-term follow-up after diagnosis resulting from newborn screening: Statement of the US Secretary of Health and Human Services Advisory Committee on Heritable Disorders and Genetic Diseases in newborns and children. Genet Med. 2006;10:259–261
  13. Kemper AR, Trotter TL, Lloyd-Puryear, MA, et al; Advisory Committee on Heritable Disorders in Newborns and Children: Committee report: A blueprint for maternal and child health primary care physician education in medical genetics and genomic medicine: Recommendations of the United States Secretary for Health And Human Services' Advisory Committee on Heritable Disorders in Newborns and Children. (in press)
  14. Downs SM, van Dyck PC, Rinaldo R, et al: Improving newborn Screening Laboratory Test Ordering and Result Reporting Using health information exchange. J Am Med Inform Assoc (in press)
  15. Direct to Consumer Genetic Testing. http://www.counsyl.com/learn/universal-genetic-testAccessed November 3, 2009

 The findings and conclusions in this report are those of the authors and do not necessarily represent the views of the Health Resources and Services Administration or the US Department of Health and Human Services.

PII: S0146-0005(09)00109-8

doi: 10.1053/j.semperi.2009.12.004

Seminars in Perinatology
Volume 34, Issue 2 , Pages 121-124 , April 2010