National Newborn Screening Meeting on New Disorders

Date: June 22 - 23, 2017
Location: Bethesda, MD

Pompe was added to the Recommended Uniform Screening Panel (RUSP) in March 2015, and X-Linked Adrenoleukodystrophy (X-ALD) and Mucopolysaccharidosis type I (MPS I) were added in February 2016. State newborn screening programs pursuing universal implementation of these three new disorders encounter laboratory, staffing, clinical follow-up, personnel, equipment, education and legislative challenges. Purpose: To convene newborn screening personnel (both APHL subawardees and non-subawardees) who support the implementation of new disorders added to the RUSP, as well as pertinent partners and stakeholders who have experience with implementing new disorders.
Meeting Objectives: 1.Discuss current status of newborn screening for Pompe, MPS-I and X-ALD.
2.Discuss policy, laboratory, follow-up and education needs, barriers and solutions for newborn screening.
3.Provide state experiences in implementing newborn screening. Agenda: https://www.newsteps.org/sites/default/files/New%20Disorders%20Agenda_event_June2017_SE.pdf Workbook: https://newsteps.org/sites/default/files/Workbook%20New%20Disorders%20Meeting%20FINAL%20%28003%29.pdf

Meeting Summary