SCID Compass

SCID Compass

Overview: 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

Contact:
Immune Deficiency Foundation
7550 Teague Road, Suite 220
Hanover, Maryland 21076
P: 410-321-6647
Website: primaryimmune.org
SCID Compass Website: www.scidcompass.org