In 2018, IDF and its partners celebrated a significant victory when the last of all 50 states finally included severe combined immunodeficiency as a condition tested on their newborn screening blood panels, an effort that took ten years. Now IDF’s SCID Compass program has taken the next step in a national effort to expedite timely medical care for babies with SCID.
SCID Compass has developed a SCID Fact Sheet designed for state newborn screening labs nationwide to distribute to parents and providers. The SCID Fact sheet explains basic information about SCID, the importance of follow-up, and guidelines parents should adhere to before a final SCID diagnosis.
Understanding what steps to take immediately after receiving an abnormal newborn screening blood test, which could indicate SCID, is critical to ensuring a successful outcome for the baby. The SCID Fact Sheet delivers a consistent message designed to assist parents in the days just after the abnormal blood screening but before a final diagnosis.
The SCID Fact Sheet is presented in a Q&A format and provides answers to the following questions:
- What is SCID?
- Is SCID treatable?
- What does this newborn screening result mean?
- How do I find out if my baby has SCID?
- How do I keep my baby safe right now?
In order to create the fact sheet, SCID Compass collected SCID informational materials from newborn screening labs in about 30 states. SCID Compass partner RTI reviewed the materials, culled the most relevant information, and generated the fact sheet.
After review from stakeholders, including parents and providers, the sheet is now ready for distribution to newborn screening labs in all 50 states. The sheet comes in two versions. One version is customizable, with space at the bottom for each state to list its newborn screening department contact information. The other version contains SCID Compass contact information at the bottom.
Both versions are available on the SCID Compass website so that state labs, as well as parents and providers, can access them.