Severe Combined Immunodeficiency (SCID) Educational Resources

June 2015


NewSTEPs has compiled educational resources that can be used to support Severe Combined Immunodeficiency (SCID) screening efforts in states and regions.

The American College of Medical Genetics (ACMG) ACTion (ACT) sheet for healthcare professionals
The Immune Deficiency Foundation (IDF) website has information on all immunodeficiency disorders including SCID, as well as information on learning about and living with a primary immunodeficiency. The IDF also has a blog on SCID.
The Baby’s First Test website provides information for parents on all newborn screening disorders including SCID.
The SCID website was designed by a parent of a child with SCID to provide information for families and how to raise awareness about this primary immunodeficiency.
The Clinical Laboratory Standards Institute (CLSI) released a guideline for laboratories to incorporate SCID into their screening panels, document NBS06-A entitled “Newborn Blood Spot Screening for Severe Combined Immunodeficiency by Measurement of T-cell Receptor Excision Circles; Approved Guideline”.
• A SCID pilot study from the State of New York Department of Health and funded assistance provided by the Newborn Screening Translational Research Network (NBSTRN)
The Centers for Disease Control and Prevention (CDC) website maintains information on the importance of screening for SCID along with laboratory program activities and program outcomes.
The Newborn Screening Education project, a joint venture between the Virginia Department of Health (VDH), the University of Virginia Office of Continuing Medical Education and the University of Virginia Children's Hospital, has expanded its current online Newborn Dried Blood Spot training module to include content on Severe Combined Immunodeficiency Syndrome (SCID).
• The Immune Deficiency Foundation published a powerful video that highlights a SCID success story and provides valuable tools to help others cope with the challenges of SCID.