In 2013, several groups collaborated on a project to report the early experience of newborn screening (NBS) for Severe Combined Immune Deficiency (SCID). Ten states plus the Navajo Area Indian Health Service contributed data from over 3 Million newborns screened with a TREC test to this ground-breaking effort. The results were published in the Journal of the American Medical Association (JAMA) in 2014.
Now in 2019, every state is screening for SCID and NBSTRN has been tasked with organizing an effort to update the “JAMA paper”. All state NBS programs and healthcare teams treating newborns identified with an immune deficiency through NBS are welcome to contribute information.
We created a survey to report aggregate data. You can access the survey at https://is.gd/scidsurvey. Please let us know if you have any questions or suggestions.