The Immune Deficiency Foundation (IDF), https://primaryimmune.org, the national patient organization for people with Primary Immunodeficiency (PI) Diseases, will receive a $4 Million grant from HRSA https://www.hrsa.gov. The plan is to design and implement an advanced screening and education program for people with Severe Combined Immunodeficiency (SCID) in rural areas or underserved communities.
Currently, 47 states have fully implemented newborn screening for SCID which covers about 95 percent of births in the U.S. Despite this success, significant challenges remain for patients, families, clinicians, and public health professionals.
These challenges include developing communication skills between screening communities, general awareness and knowledge about SCID, the importance for SCID screening, how to solve disparities in knowledge, and effective ways to help care for patients with SCID in rural and underserved communities.
To develop and implement the program, IDF is partnering with the Association of Public Health Laboratories (APHL) https://www.aphl.org, the primary professional association responsible for supporting new born screening programs and will be working closely with RTI International https://www.rti.org. .
APHL supports implementation of SCID screening within state newborn screening programs by providing technical assistance, training, and access to resources and works directly with the RFI International’s “Center for Newborn Screening, Ethics, and Disability Studies”.
The Center includes a multidisciplinary team of professionals from special education, psychology, medicine, chemistry, genetic counseling and public health. The team conducts research, implements pilot studies evaluates programs, and provides technical assistance to support evidence-based strategies to inform state and national policy.
New research will be conducted to assess the outcomes experienced by families as a result of SCID newborn screening. In addition, IDF and partners are going to create an enhanced telehealth and peer support model that can be used to support families in rural and underserved areas.
For more information on SCID, go to www.primaryimmune.org/SCID,