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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

 First Annual MeetingSecond Annual Meeting
Total Participants22100.0035100.00
Participant Type
 Patient (Survivor or Parent)1150.002160.00
 Healthcare Professional627.27925.71
*Note: individuals can be part of more than one group
Involvement (2017 CRRAB Meeting Only)
 Attended CRRAB 2016 1028.57
 Registered for CRRAB 20172777.14
 Not involved previously1440.00
 Involved less than 1 month25.71
 Involved 1–3 months25.71
 Involved 3–6 months411.43
 Involved 6–9 months38.57
 Involved 9–12 months1028.57
Timing of RB Diagnosis (2016 CRRAB Meeting Only)
 Survivor (n = 3)3100.00 
30–39 years ago133.33
40–49 years ago266.67
 Parents of Children (n = 8)8100.00
 Children of Participants (n = 10)10100.00
less than 1 year ago110.00
1–5 years ago880.00
10+ years ago110.00
How they heard about CRRAB
 Research Team1045.452262.86
 Healthcare Professional14.55617.14
 Email/Pamphlet/Social Media731.82514.29
 Family Member14.5512.86
 Family Advisory Network at SickKids14.5500.00
  1. *statement was classified under more than one theme