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Table 1 Demographics of the RD sample

From: Healthcare access, satisfaction, and health-related quality of life among children and adults with rare diseases

  M (SD; range) Frequency (%)
Age of person with RD 40.90 years (21.82; 1–90)  
RD status   
 Adult with RD   787 (70%)
 Relative or caregiver of a person with a RD   76 (7%)
 Parent of a child with a RD   252 (22%)
 Other (e.g., friend; both a person with a RD and a parent to child(ren) with RD)   11 (1%)
Gender of person with RD   
 Female   752 (67%)
 Male   365 (32%)
 Something else   10 (1%)
Race of person with RD   
 American Indian or Alaska Native   9 (< 1%)
 Asian or Asian American   20 (2%)
 Black or African American   19 (2%)
 Hispanic or Latinx   28 (3%)
 Middle Eastern   6 (< 1%)
 Mixed Race   15 (1%)
 Native Hawaiian or Pacific Islander   2 (< 1%)
 White or Caucasian   1007 (89%)
 Other   16 (1%)
Education of person with RD   
 Some high school or less   99 (10%)
 High school diploma or GED   81 (8%)
 Some college   149 (15%)
 Associate’s degree technical degree   124 (13%)
 Bachelor’s degree   221 (23%)
 Some graduate school   59 (6%)
 Graduate degree   236 (24%)
Household income of person with RD   
 Under $20,000   157 (16%)
 $20,000–39,999   139 (14%)
 $40,000–59,999   122 (12%)
 $60,000–79,999   106 (10%)
 $80,000–99,999   112 (11%)
 Over $100,000   253 (25%)
Number of RDs   
 1   995 (88%)
 2   98 (9%)
 3   25 (2%)
 4   6 (< 1%)
 5   4 (< 1%)
RD course   
 Stable   304 (34%)
 Progressive   399 (44%)
 Episodic   199 (22%)
 Improving   6 (< 1%)
Diagnostic delay   
 0–6 months   293 (30%)
 7–11 months   82 (9%)
 1–3 years   224 (23%)
 4–6 years   106 (11%)
 7–9 years   54 (6%)
 10 + years   158 (16%)
 Still undiagnosed   27 (3%)
Number of doctors seen to get a diagnosis   
 1   152 (16%)
 2–3   360 (38%)
 4–5   231 (24%)
 6–10   123 (13%)
 11–15   31 (3%)
 More than 15   43 (5%)