National Severe Combined Immunodeficiency (SCID) In-Person Meeting
Severe Combined Immunodeficiency (SCID) was added to the Recommended Uniform Screening Panel (RUSP) in May 2010. As of May 2017, 46 newborn screening programs offer universal newborn screening for SCID and the remaining NBS programs continue to work towards full implementation. Supporting widespread adoptino of early and accurate laboratory detection of SCID in newborns will require relationships with specialists in immunology and the development of clinical referral networks that can assist with follow-up and treatment. Meeting Objectives:
1. Provide input and offer expert guidance on implementation of SCID
2. Share information on progress toward Universal SCID Newborn Screening in the United States and discuss new challenges
3. Identification of quality improvement initiatives in SCID newborn screening
4. Development of interactive relationships between clinical and NBS program staff to facilitate collaboration
5. Consider case definitions for SCID and the importance of data reporting Purpose: To convene SCID newborn screening stakeholders and facilitate the strengthening of relationships between the SCID clinical referral network and the newborn screening community within each state.
Please find the SCID in-person meeting summary, which includes summaries and links to many presentations given.