When a patient organization embarks on a mission to establish a program for families whose children are affected by a rare, life-threatening health condition, where should it start? The Immune Deficiency Foundation’s (IDF) SCID Compass program started by asking the families themselves what they wanted as they navigated caring for their child.
That responsive approach recently garnered SCID Compass recognition as the winner of the 2023 Baby’s First Test GRACE Award. Presented by Baby’s First Test, the GRACE, or Generating Real Action by Cultivating Engagement, Award is presented to programs “that engage families and communities in newborn screening with grace and authenticity, so that family needs are met, and lessons learned are integrated into future strategies,” according to the Baby’s First Test website.
SCID Compass is an educational program that serves families of children and adults with severe combined immunodeficiency (SCID), a primary immunodeficiency (PI) that results in the lack of an immune system. SCID is identified in infancy through newborn screening (NBS), and without treatment, babies develop fatal infections. Treatment consists of bone marrow transplant (BMT), gene therapy, or enzyme replacement therapy for ADA-SCID.
SCID Compass guides parents of infants diagnosed with SCID, people living with SCID, and the medical community through the journey of learning about SCID and finding support at every stage, from diagnosis to treatment to recovery.
A grant from the Health Resources and Services Administration (HRSA), a federal agency under Health and Human Services, supported SCID Compass for five years, and now IDF maintains resources created as part of its website/digital footprint. During the implementation of SCID Compass, the program operated through a partnership between IDF, RTI International, and the Association of Public Health Laboratories (APHL) with support from Expecting Health, SCID Angels for Life Foundation, and the Primary Immune Deficiency Treatment Consortium (PIDTC).
Parents of children with SCID, adults with SCID, and health professionals who served on the SCID Compass Steering Committee and Parent/Patient Advisory Board proved an invaluable source of information for the project. From its inception, SCID Compass relied on data collected through several surveys and dozens of interviews with parents, providers, and NBS programs to shape the program.
Parents identified areas of need, including understanding SCID, SCID types, and how SCID is diagnosed; knowing treatment options and the purpose and types of pre-treatment conditioning; navigating the hospital stay and post-treatment; and adjusting to the new normal at home. Those topics, along with frequently asked questions and what to ask your doctor, are all covered on the IDF SCID Compass page.
An important resource generated by SCID Compass is the SCID Compass toolkit. The downloadable toolkit explains what to expect during the SCID journey and contains printable materials, including SCID fact sheets for parents and providers, a family planning guide, a chapter on SCID from the IDF Patient and Family Handbook, and a guide to BMT. The toolkit is presented in 12 languages—English, Spanish, French, Portuguese, German, Simple Mandarin, Tagalog, Hebrew, Korean, Vietnamese, Dine Bizaad (the language of the Navajo Nation), and Arabic.
The role of NBS in SCID diagnosis is a key part of the SCID Compass website. The NBS content describes how screening is performed and discusses how abnormal results can prompt further evaluation to determine if a baby has SCID. It also explains the importance of confirmatory testing and seeking care from a clinical immunologist.
SCID Compass also expanded scientific literature related to SCID. Research performed by SCID Compass partners resulted in several published papers focusing on parent uncertainty related to a SCID diagnosis, parent informational and support needs, healthcare provider information needs, and the landscape of NBS for SCID.
The reach of SCID Compass extends well beyond rich content for parents and providers, as it has made strides in helping states implement newborn screening for SCID. Throughout the grant, APHL provided funding and technical assistance to support states in their implementation of SCID NBS. Support through equipment, instrumentation upgrades, maintenance, and training ensured SCID screening for families across the U.S.
While SCID Compass succeeded thanks to the dedication of all its partners, the program owes a particular debt to Dr. Jack Routes, professor emeritus of pediatrics, microbiology, and immunology and section chief of allergy and clinical immunology at the Medical College of Wisconsin, who served as medical director for the program and oversaw content, and Heather Smith, president and co-founder of SCID Angels for Life, who provided connections with parents, and the parents of children with SCID who generously shared their stories.
“Whether it was completing one of our many surveys, participating in a focus group, user-testing resources, or being interviewed for a blog post or a video, this program would not be what it is without parents and families taking time out of their busy lives to share their journeys with SCID with our team,” said Alissa Creamer, IDF senior director of community services and manager of the SCID Compass program.
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