In the Fall of 2019, Dr. Jon Klein in Neonatology reached out to the SCID (Severe Combined Immunodeficiency) newborn screening team. He was concerned with the high number of premature infants that had presumptive positive SCID screens. In addition, none of these babies ended up having SCID. Dr. Klein’s concern made the Iowa Newborn Screening Program do some research into this issue.
On the newborn screening laboratory side, some improvements were made to the SCID assay. On the Follow-Up side, a 3-pronged protocol was developed specifically for premature infants and implemented in December, 2019. This has greatly reduced the number of premature infants who need confirmatory testing.
In February 2020, Dr. MaryBeth Fasano (Internal Medicine-Allergy) and Carol Johnson from the Iowa Newborn Screening Program presented this new protocol at a national SCID webinar. Along with the protocol, they asked the question, “what is the best practice for screening premature infants for SCID?” They found out that most newborn screening programs are struggling with this issue as well and that there really isn’t a good answer – at least right now.
On September 17, 2020, the national SCID Screening for Premature Infants Quality Improvement Project was launched by the Association of Public Health Laboratories (the national newborn screening oversight group; “APHL”). Participating newborn screening programs will provide data to APHL from 2018-2020 that hope to answer the question, “how do you effectively screen a premature infant for SCID?”.
The moderator stated at the beginning of the meeting that without Iowa’s newborn screening program reaching out to APHL and asking questions about SCID screening in the premature infant, this QI group would have never been formed. In addition, the presentation that Dr. Fasano and Carol did apparently hit home. Many people reached out to APHL to say that this is a problem that needs to be addressed. For these reasons, the quality improvement project was developed.
This success story points out the collaborative nature of Iowa's newborn screening program. Thanks to Dr. Klein for bringing attention to this issue. Also thanks to Dr. Travis Henry and Valerie Van Zee from the newborn screening lab for their work to improve the assay. Many thanks to Dr. Diana Bayer and Dr. Polly Ferguson (Peds Rheumatology, Allergy and Immunology), Dr. Fasano and the Follow-Up team for their work in developing the new protocol.