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Patient Engagement in Retinoblastoma Research

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Results from a study suggest that members of the Canadian Retinoblastoma Research Advisory Board (CRRAB) are satisfied with the way the organization has handled patient engagement in research and believe that this engagement has had a positive impact.

Members of CRRAB, which is made up of patients with retinoblastoma, health care professionals, and researchers, participated in 2 surveys on patient engagement in research

In the initial survey, 11 patients, 6 health care professionals, and/or 7 researchers participated. Overall, they believed that patients can have meaningful impact on research. In the second survey, 21 patients, 9 health care professionals, and/or 8 researchers participated and also believe that patients have a meaningful impact on retinoblastoma research. Members of CRRAB joined to increase knowledge, be a part of a community, and support patient engagement.

The authors concluded that CRRAB can continue to be used as a framework for patient engagement.


Gelkopf M, Avramov I, Baddeliyanage R, et al. The Canadian Retinoblastoma Research Advisory Board: A framework for patient engagement. Res Involv Engagem. 2020;6(7): eCollection 2020.

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