Table 1 Demographics of CRRAB members at the time of the first and second annual CRRAB meetings: total participants, participant types, previous involvement and how they first learned about CRRAB
From: The Canadian retinoblastoma research advisory board: a framework for patient engagement
| Â | First Annual Meeting | Second Annual Meeting | ||
|---|---|---|---|---|
n | % | n | % | |
Total Participants | 22 | 100.00 | 35 | 100.00 |
Participant Type | ||||
 Patient (Survivor or Parent) | 11 | 50.00 | 21 | 60.00 |
 Healthcare Professional | 6 | 27.27 | 9 | 25.71 |
 Researcher | 6 | 27.27 | 8 | 22.86 |
 Other | 2 | 9.09 | 0 | 0.00 |
*Note: individuals can be part of more than one group | ||||
Involvement (2017 CRRAB Meeting Only) | ||||
 Attended CRRAB 2016 |  | 10 | 28.57 | |
 Registered for CRRAB 2017 | 27 | 77.14 | ||
 Not involved previously | 14 | 40.00 | ||
 Involved less than 1 month | 2 | 5.71 | ||
 Involved 1–3 months | 2 | 5.71 | ||
 Involved 3–6 months | 4 | 11.43 | ||
 Involved 6–9 months | 3 | 8.57 | ||
 Involved 9–12 months | 10 | 28.57 | ||
Timing of RB Diagnosis (2016 CRRAB Meeting Only) | ||||
 Survivor (n = 3) | 3 | 100.00 |  | |
 30–39 years ago | 1 | 33.33 | ||
 40–49 years ago | 2 | 66.67 | ||
 Parents of Children (n = 8) | 8 | 100.00 | ||
 Children of Participants (n = 10) | 10 | 100.00 | ||
 less than 1 year ago | 1 | 10.00 | ||
 1–5 years ago | 8 | 80.00 | ||
 10+ years ago | 1 | 10.00 | ||
How they heard about CRRAB | ||||
 Research Team | 10 | 45.45 | 22 | 62.86 |
 Healthcare Professional | 1 | 4.55 | 6 | 17.14 |
 Email/Pamphlet/Social Media | 7 | 31.82 | 5 | 14.29 |
 Co-Worker | 3 | 13.64 | 0 | 0.00 |
 Family Member | 1 | 4.55 | 1 | 2.86 |
 Patient | 0 | 0.00 | 1 | 2.86 |
 Family Advisory Network at SickKids | 1 | 4.55 | 0 | 0.00 |