American Academy of Pediatrics Newborn Screening Task Force Recommendations: How Far Have We Come?

Author:

Lloyd-Puryear Michele A.1,Tonniges Thomas2,van Dyck Peter C.1,Mann Marie Y.1,Brin Amy2,Johnson Kay3,McPherson Merle1

Affiliation:

1. Health Resources and Services Administration, Rockville, Maryland

2. American Academy of Pediatrics, Elk Grove Village, Illinois

3. Johnson Consulting Group, Hinesburg, Vermont

Abstract

The partnership of the Health Resources and Services Administration (HRSA)/Maternal and Child Health Bureau (MCHB) and the American Academy of Pediatrics (AAP) for improving health care for all children has long been recognized. In 1998, the establishment of the Newborn Screening Task Force marked a major initiative in addressing the needs of the newborn screening system. At the request of HRSA/MCHB, the AAP convened the task force to ensure that pediatric clinicians assumed a leadership role in examining the totality of the newborn screening system, including the necessary linkage to medical homes. The task force's report, published in 2000, outlined major recommendations for federal, state, and other national partners in addressing the identified barriers and needed enhancements of the care delivery system. Today, manifestations of the task force's recommendations are evident, many of which occurred under the leadership of HRSA/MCHB and the AAP. These activities are detailed in this article, with a discussion of future progression toward a quality, consistent, coordinated system of care for children identified with positive newborn screening results, their families, and the child health professionals who care for them.

Publisher

American Academy of Pediatrics (AAP)

Subject

Pediatrics, Perinatology and Child Health

Reference14 articles.

1. National Newborn Screening and Genetics Resource Center. Overview of newborn screening. Available at: http://genes-r-us.uthscsa.edu/resources/newborn/overview.htm. Accessed July 12, 2005

2. American Academy of Pediatrics, Newborn Screening Task Force. Serving the family from birth to the medical home: newborn screening a blueprint for the future. Pediatrics. 2000;106:389–427

3. Departments of Labor, Health and Human Services, and Education and Related Agencies Appropriation Bill, 1999, 105th Cong 2nd Sess 1998;539:50–712

4. Mann MY, Lloyd-Puryear MA, Linzer D. Enhancing communication in the 21st century. Pediatrics. 2006;117(5). Available at: www.pediatrics.org/cgi/content/full/117/5/SE1/e315

5. Kim S, Lloyd-Puryear MA, Tonniges TF. Examination of the communication practices between state newborn screening programs and the medical home. Pediatrics. 2003;111(2). Available at: www.pediatrics.org/cgi/content/full/111/2/e120

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