Table 2.
Disease of interest per stakeholder category: phase I
| Disease of interest | Stakeholder category | Mean (total)* (%) | |||||
|---|---|---|---|---|---|---|---|
| Parents/patients | Physicians | PCORI awardees | Bioinformaticists | Scientists | Others | ||
| 1. Autism | 4 (33.3%) | 1 (11.1%) | 1 (25%) | 8 (53.3%) | 5 (71.4%) | 39.40 | |
| 2. CVD | 4 (33.3%) | 4 (44.4%) | 3 (50%) | 2 (50%) | 3 (20%) | 27.30 | |
| 3. Cancer | 6 (50%) | 3 (33.3%) | 3 (50%) | 1 (25%) | 4 (26.7%) | 1 (14.2%) | 27.30 |
| 4. Other | 27.30 | ||||||
| Details for “Other” disease category | |||||||
| Turner syndrome | 1 (8.3%) | ||||||
| Metabolic disease | 1 (8.3%) | ||||||
| Rehabilitation medicine | 1 (11.1%) | 1 (6.7%) | |||||
| Nephrology | 1 (11.1%) | ||||||
| Infectious Diseases | 1 (11.1%) | 1 (16.7%) | 1 (6.7%) | ||||
| Research Informatics | 1 (25%) | 1 (6.7%) | 1 (14.2%) | ||||
| Sleep disorders | 1 (6.7%) | ||||||
| Genetics | 1 (6.7%) | ||||||
| Bipolar disorder | 1 (14.2%) | ||||||
| ADHD | 1 (14.2%) | ||||||
| Allergies | 1 (14.2%) | ||||||
| Asthma | 1 (14.2%) | ||||||
Numbers and percentages are shown per each stakeholder category
ADHD attention-deficit hyperactivity disorder, CAB community advisory board, CVD cardiovascular disease, PCORI Patient-Centered Outcomes Research Institute
*The average total was calculated based on the total number of CAB members (N = 33). Of note, some CAB members selected more than one disease category