Severe Combined Immunodeficiency (SCID) Newborn Screening was added to the Recommended Uniform Screening Panel (RUSP) in May of 2010 following rigorous state based implementation programs in Massachusetts and Wisconsin. SCID is a primary immune deficiency that is characterized by the lack of a functioning immune system. Newborns with SCID appear healthy, but remain extremely vulnerable to infection. Exposure to common infections or live vaccines is life threatening. SCID leads to death in infancy unless treatment, usually by stem cell trasnplantation, is provided. SCID affects approximately one in 58,000 live births and is treatable if detected early in life.
NewSTEPs partners with state newborn screening programs, partner organizations and federal agencies to provide a central location for SCID resources. If you have additional resources that you would like included, please contact Ruthanne Sheller.
SCID Newborn Screening Status: Map of the screening status of newborn screening disorders in the US
SCID Quarterly Webinar: NewSTEPs, in close partnership with the Newborn Screening Translation Research Network (NBSTRN), hosts a National SCID webinar every quarter. These webinars address legislative and regulatory challenges, laboratory methodologies and techniques and short-term follow-up activities relating to SCID. Each webinar features individuals from the community that have experience with SCID, experts to provide topical advice and they usually end with an interactive discussion among participants. Please refer to the NewSTEPs listserv for reminders, agendas and call-in information about these quarterly webinars. If you have ideas or suggestions for future webinars, please contact Ruthanne Sheller.
Data Collection: The collection of data from SCID screening will help ensure all babies are screened and receive appropriate follow-up of an abnormal screen. By providing this data and information on timeliness of diagnosis and treatment, a true pricture of national prevalence can be developed. NewSTEPs collects outcome data on SCID newborn screening, including quality indicators and basic information about the cases diagnosed with SCID. Specific data to be collected can be found in the NewSTEPs Data Repository.
Educational Resources: NewSTEPs has compiled educational resources that can be used to support screening efforts in states and regions. For all educational resources, pertinent publications and archived webinars please visit the NewSTEPs resource library and filter for SCID. NewSTEPs has published a report that provides a comprehensive overview of APHL SCID implementation activities resulting from the HRSA Cooperative Agreement, lessons learned and some notes on the future of SCID screening. This report may also serve as a guidance tool for NBS programs to reference when they are adding new disorders to their state panels. It explores the stages and complexities involved in successful implementation, including authorization, equipment acquisition, training, assay validation, pilot studies, short-term follow-up, clinical engagement and education.
Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC) Recommendations:
- The Addition of SCID to the Recommended Uniform Screening Panel (RUSP) and related T-cell Lymphocyte Deficiencies to the List of Secondary Targets as a Comprehensive Entity (February 25, 2010)
- Report on Newborn Screening for SCID (May 19, 2011)
- Response by the Secretary to the May 19, 2011 Letter (July 27, 2011)
- For information shared during recent ACHDNC meetings relative to SCID, please visit the ACHDNC meeting wepage.