SCID Compass – An educational program of the Immune Deficiency Foundation

SCID Compass, an educational program of the Immune Deficiency Foundation (IDF), seeks to improve outcomes for infants with severe combined immunodeficiency (SCID) by enhancing access to and use of educational resources, providing linkages to critical services for patients and families, and developing protocols and mechanisms for long-term follow-up for infants identified with SCID through newborn screening.

SCID Compass is made possible by a two-year, Health Resources and Services Administration (HRSA) grant funded by the authority of the Newborn Screening Saves Lives Reauthorization Act of 2014 (P.L. 113240).

Goals and vision

SCID Compass will serve as a hub of information and resources for parents, caregivers, and professionals as they navigate next steps after an abnormal TREC-screening for SCID with the goal of:

• Increasing awareness and knowledge about SCID.
• Supporting state newborn screening programs.
• Linking families with children with SCID, especially those in rural and underserved areas, to clinical centers with expertise in treatment and management.
• Developing strategies for long-term follow-up.
• Evaluating program performance.

Programmatic activities

• Conducting a journey mapping exercise and needs assessment survey of parents/caregivers and providers.
• Creating new, linguistic and culturally appropriate materials.
• Developing centralized website housing all new and edited materials, resources, and information.
• Implementing a mechanism to link families with children with SCID, especially those in rural and underserved areas, to clinical centers.
• Partnering with the United States Immunodeficiency Network (USIDNET) and collaborating with the Association of Public Health Laboratories’s NewSTEPS program to harmonize existing data registries.

This project is supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) as part of an award totaling $4 million with 0% financed with nongovernmental sources. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by HRSA, HHS or the U.S. Government.