SCID Compass

SCID Compass is a support and educational initiative funded by the U.S. Health Resources and Services Administration (HRSA) to improve screening and education programs for people with Severe Combined Immunodeficiency (SCID).

Funder: U.S. Health Resources and Services Administration (HRSA), administered by Immune Deficiency Foundation (IDF)

Geographic Scope: United States (all 50 states and associated territories)

Focus Areas:

• SCID screening and education
• Newborn screening (NBS) programs
• Support for families with SCID
• Health education for healthcare professionals
• Access and inclusion for underserved populations
• Addressing disparities in knowledge and barriers to services
• Long-term follow-up strategies for SCID
• Telehealth support services

Award Information:

• Original grant: $4,000,000 over two years (2018-2020)
• Extension grant: $2,970,000 for one year (2020-2021, covering year 3)
• Total funding through extension: $6,970,000

Program Achievements (2018-2020):

• Ensured all 53 newborn screen programs in U.S. and associated territories offer universal screening for SCID (covering ~99.9% of U.S. births)
• Established SCID Compass program as support and educational initiative for parents and healthcare professionals
• Launched website www.scidcompass.org
• Presented on SCID and SCID Compass at conferences for parents and healthcare professionals
• Collaborated with APHL and RTI to collect data from parents and healthcare professionals
• Established telehealth support group for parents
• Began development of Spanish version of SCID Compass website

Ongoing Goals:

• Address disparities in knowledge and care for SCID patients in rural and underserved communities
• Increase general awareness and knowledge about SCID and SCID newborn screening
• Develop coordinated long-term follow-up strategies for SCID
• Build upon initial work through continued awareness, education, and support

Key Partners:

• Association of Public Health Laboratories (APHL)
• RTI International (non-profit institute specializing in communication science, evaluation, and family/patient studies)
• Primary Immune Deficiency Treatment Consortium (PIDTC) - consortium of 43 treatment centers

Target Audiences:

• Families and parents of children with SCID
• Healthcare providers
• Public health professionals
• General public