Table 1 Demographics for Rare Voices members, listening session participations, and individuals who completed the survey for rare disease community feedback on the research agenda
From: Developing a community-led rare disease ELSI research agenda
Participant characteristic | Rare voices stakeholders (n = 22) n (%) | Listening session participants (n = 65) n (%) | Community feedback survey participants (n = 37) n (%) |
|---|---|---|---|
Age (years)a | |||
< 20 years | 4 (18%) | 13 (20%) | 4 (11%) |
20–29 | 1 (5%) | 9 (13%) | 4 (11%) |
30–39 | 8 (36%) | 18 (28%) | 11 (30%) |
40–49 | 6 (27%) | 17 (26%) | 12 (32%) |
50–59 | 2 (9%) | 5 (8%) | 4 (11%) |
60 years or older | 1 (5%) | 2 (3%) | 2 (5%) |
Prefer not to answer | 0 (0%) | 1 (2%) | 0 (0%) |
Age of Participants’ Affected Child/Childrenb,c | |||
0–5 | 3 (25%) | 20 (38%) | N/A |
6–10 | 4 (33%) | 9 (17%) | N/A |
11–20 | 3 (25%) | 19 (36%) | N/A |
21 and above | 2 (17%) | 5 (9%) | N/A |
Deceased | 2 (17%) | 2 (4%) | N/A |
Unknown | 0 (0%) | 2 (4%) | N/A |
Gender | |||
Female | 17 (77%) | 55 (85%) | 33 (89%) |
Male | 5 (23%) | 10 (15%) | 4 (11%) |
Education | |||
Less than high school | 3 (13.5%) | 7 (10%) | N/A |
High school degree | 3 (13.5%) | 16 (25%) | N/A |
Associates degree or some college | 0 (0%) | 2 (3%) | N/A |
Other post-high school training | 0 (0%) | 5 (8%) | N/A |
Bachelor’s degree | 5 (23%) | 15 (23%) | N/A |
Graduate degree | 11 (50%) | 20 (31%) | N/A |
Raced | |||
American Indian/Alaskan Native | 0 (0%) | 3 (4%) | 1 (3%) |
Asian | 1 (5%) | 5 (7%) | 1 (3%) |
Black/African American | 3 (14%) | 6 (9%) | 1 (3%) |
Native Hawaiian/Other Pacific Islander | 0 (0%) | 0 (0%) | 0 (0%) |
White | 18 (82%) | 54 (83%) | 32 (91%) |
Other | 0 (0%) | 2 (3%) | 0 (0%) |
Unknown/prefer not to answer | (0%) | 1 (2%) | 3 (8%) |
Ethnicity | |||
Hispanic | 2 (9%) | 5 (8%) | 4 (11%) |
Not Hispanic | 20 (91%) | 58 (89%) | 32 (86%) |
Unknown/Prefer not to answer | 0 (0%) | 2 (3%) | 1 (3%) |
Area Living | |||
Rural | 7 (32%) | 23 (36%) | N/A |
Urban | 3 (14%) | 32 (49%) | N/A |
Suburban | 12 (54%) | 10 (15%) | N/A |
Average Annual Incomee | |||
$0—$25,000 | N/A | 1 (2%) | N/A |
$25,001—$50,000 | N/A | 7 (14%) | N/A |
$50,001—$75,000 | N/A | 9 (17%) | N/A |
$75,001—$100,000 | N/A | 8 (15%) | N/A |
Over $100,000 | N/A | 17 (32%) | N/A |
Unknown/Prefer not to answer | N/A | 10 (20%) | N/A |
Support group participationf,g | |||
Yes | 10 (63%) | 35 (54%) | N/A |
No | 5 (31%) | 29 (44%) | N/A |
Unknown | 1 (6%) | 1 (2%) | N/A |