Table 1.

Description of survey participants and their child with SCID.

Child and family characteristics	N	%
Relationship to SCID child
→ Father	10	13.16%
→ Mother	66	86.84%
Race
→ White	62	81.58%
→ Black or African American	2	2.63%
→ Asian	1	1.32%
→ Other race	3	3.95%
→ More than one race	6	7.89%
→ Prefer not to say	2	2.63%
Ethnicity
→ Hispanic or Latino	8	10.53%
→ Not Hispanic or Latino	67	88.16%
→ Prefer not to say	1	1.32%
Live in “Immunology Desert”a
→ No	64	84.21%
→ Yes	12	15.79%
Area description
→ Urban (large or small city)	34	44.74%
→ Suburban (town outside city limits)	26	34.21%
→ Rural (small community)	16	21.05%
Highest level of education completed
→ 8th grade or less	7	9.21%
→ Some HS but did not graduate	2	2.63%
→ HS or GED	7	9.21%
→ Some college or 2-year degree	20	26.32%
→ 4-year college graduate	19	25.00%
→ More than 4-year college degree	21	27.63%
Children
→ Total number of children (Mean, SD)	2.62	1.92
→ Total children with SCID (Mean, SD)	1.28	0.78
→ Children who died from SCID (Mean, SD)	0.20	0.52
→ Age of Child (at time of survey completion)	10.92	10.59
Child's SCID type
→ Common Gamma Chain of the T-Cell Receptor (XSCID/IL2RG)	32	42.11%
→ Deficiency of the Alpha Chain of the IL-7 Receptor (IL-7Rα)	5	6.58%
→ Deficiency of Janus Kinase 3 (JAK3)	2	2.63%
→ Deficiency of the CD3 Chains	1	1.32%
→ RAG1/RAG2	11	14.47%
→ ADA Deficiency	12	15.79%
→ DCLRE1C (Artemis) Mutation	2	2.63%
→ Other	2	2.63%
→ Unknown	9	11.84%
Child diagnosed with Omenn Syndrome
→ Yes	2	2.63%
→ No	69	90.79%
→ I don't know	5	6.58%
Diagnosed through newborn screening
→ Yes	34	44.74%
→ No	42	55.26%

^aImmunology Desert is defined as having a home zip code more than 150 miles from a primary immunodeficiency clinic.