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.
- Location: Bethesda, MD
- Dates: June 22-23,2017
- Agenda: Found linked here.
- Workbook: Found linked here.
- Meeting Summary: Found linked here.
- 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:
- Discuss current status of newborn screening for Pompe, MPS-I and X-ALD.
- Discuss policy, laboratory, follow-up and education needs, barriers and solutions for newborn screening.
- Provide state experiences in implementing newborn screening.
If you have any questions please contact Kshea Hale at email@example.com or 240-485-3842.