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American Academy of Pediatrics Newborn Screening Task Force recommendations: how far have we come?
Michele A Lloyd-Puryear1, Thomas Tonniges, Peter C van Dyck
1Health Resources and Services Administration, Rockville, MD 20857, USA. mpuryear@hrsa.gov
Insights
The Health Resources and Services Administration (HRSA)/Maternal and Child Health Bureau (MCHB) and American Academy of Pediatrics (AAP) partnership improved newborn screening systems. Recommendations from a 2000 task force report continue to enhance care for infants with positive results.
Area of Science:
- Public Health
- Pediatric Healthcare
- Genetics and Screening
Background:
- A longstanding partnership exists between the Health Resources and Services Administration (HRSA)/Maternal and Child Health Bureau (MCHB) and the American Academy of Pediatrics (AAP).
- The 1998 establishment of the Newborn Screening Task Force was a significant step in addressing newborn screening system needs.
- The task force aimed to ensure pediatric clinicians led the examination of the newborn screening system and its integration with medical homes.
Purpose of the Study:
- To detail the evolution and impact of the Newborn Screening Task Force recommendations.
- To highlight the collaborative efforts of HRSA/MCHB and AAP in advancing newborn screening.
- To discuss future directions for a coordinated care system for infants with positive newborn screening results.
Main Methods:
- Review of historical initiatives and partnership activities between HRSA/MCHB and AAP.
- Analysis of the 2000 Newborn Screening Task Force report and its subsequent implementation.
- Discussion of current progress and future strategies for newborn screening care delivery.
Main Results:
- The Newborn Screening Task Force report (2000) provided key recommendations for improving newborn screening.
- Numerous initiatives, led by HRSA/MCHB and AAP, have implemented task force recommendations.
- Progress has been made towards a more coordinated and quality care system for infants identified through newborn screening.
Conclusions:
- The collaborative efforts of HRSA/MCHB and AAP have significantly advanced newborn screening.
- Continued focus on coordinated care is essential for children with positive newborn screening results.
- Future efforts should aim to further enhance the quality, consistency, and coordination of care for these children and their families.
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.
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