Table 1.
Demographic Characteristics and Primary Symptoms of Applicants to the Undiagnosed Diseases Network.*
| Variable | All Applicants (N = 1519)† |
Pediatric Applicants (N = 615) |
Accepted Pediatric Applicants (N = 350) |
Adult Applicants (N = 904) |
Accepted Adult Applicants (N = 251) |
|
|---|---|---|---|---|---|---|
| Sex — no. (%)‡ | ||||||
| Male | 704 (46) | 318 (52) | 170 (49) | 386 (43) | 109 (43) | |
| Female | 811 (53) | 297 (48) | 180 (51) | 514 (57) | 141 (56) | |
| Other | 4 (<1) | 0 | 0 | 4 (<1) | 1 (<1) | |
| Age — yr | 29±22 | 8±5 | 8±5 | 43±16 | 39±16 | |
| Race or ethnic group — no. (%)‡ | ||||||
| White | 1178 (78) | 452 (73) | 259 (74) | 726 (80) | 197 (78) | |
| Asian | 82 (5) | 41 (7) | 24 (7) | 41 (5) | 14 (6) | |
| Black | 73 (5) | 28 (5) | 18 (5) | 45 (5) | 13 (5) | |
| Multiracial | 65 (4) | 34 (6) | 16 (5) | 31 (3) | 7 (3) | |
| American Indian or Alaska Native | 3 (<1) | 1 (<1) | 0 | 2 (<1) | 0 | |
| Native Hawaiian or other Pacific Islander | 1 (<1) | 1 (<1) | 1 (<1) | 0 | 0 | |
| Other | 117 (8) | 58 (9) | 32 (9) | 59 (7) | 20 (8) | |
| Hispanic or Latino ethnic group — no. (%)‡ | ||||||
| Hispanic or Latino | 156 (10) | 110 (18) | 64 (18) | 46 (5) | 19 (8) | |
| Not Hispanic or Latino | 1133 (75) | 424 (69) | 237 (68) | 709 (78) | 185 (74) | |
| Unknown or not reported | 230 (15) | 81 (13) | 49 (14) | 149 (16) | 47 (19) | |
| Primary symptoms — no. (%) | ||||||
| Neurologic | 607 (40) | 285 (46) | 171 (49) | 322 (36) | 112 (45) | |
| Musculoskeletal or orthopedic | 148 (10) | 63 (10) | 43 (12) | 85 (9) | 25 (10) | |
| Immunologic or allergic | 104 (7) | 28 (5) | 15 (4) | 76 (8) | 17 (7) | |
| Gastrointestinal | 99 (7) | 38 (6) | 15 (4) | 61 (7) | 7 (3) | |
| Rheumatologic | 86 (6) | 12 (2) | 10 (3) | 74 (8) | 18 (7) | |
| Cardiac or vascular | 52 (3) | 21 (3) | 12 (3) | 31 (3) | 13 (5) | |
| Endocrinologic | 43 (3) | 17 (3) | 11 (3) | 26 (3) | 5 (2) | |
| Respiratory | 31 (2) | 11 (2) | 3 (1) | 20 (2) | 6 (2) | |
| Hematologic | 26 (2) | 8 (1) | 3 (1) | 18 (2) | 6 (2) | |
| Infectious | 20 (1) | 1 (<1) | 0 | 19 (2) | 1 (<1) | |
| Dermatologic | 16 (1) | 2 (<1) | 1 (<1) | 14 (2) | 4 (2) | |
| Renal | 15 (1) | 6 (1) | 4 (1) | 9 (1) | 5 (2) | |
| Other | 272 (18) | 123 (20) | 62 (18) | 149 (16) | 32 (13) |
Plus–minus values are means ±SD. P values (calculated with Fisher’s exact test) for the comparison of pediatric applicants with accepted pediatric applicants did not show significant differences (P<0.01) for any variables. P values for the comparison of adult applicants with accepted adult applicants did not show significant differences for any variables except for neurologic symptoms. P values for the comparison of pediatric applicants with adult applicants showed significant differences for the following variables: male sex, female sex, white race, Hispanic or Latino ethnic group, not Hispanic or Latino ethnic group, neurologic symptoms, immunologic or allergic symptoms, rheumatologic symptoms, and infectious symptoms. Percentages may not total 100 because of rounding.
By May 23, 2017, a total of 1203 applications had been reviewed or withdrawn and 316 applications were still under review at the clinical sites.
Data on sex, race, and ethnic group were reported by the patient, a family member, or a representative.