Current Research

Introduction

Canada’s Strategy for Patient-Oriented Research promotes engagement of patients – including survivors and informal caregivers – throughout the research process.

Knowledge produced from research currently moves too slowly from lab to bedside.   By including patients in the research process, we can change this. Patients can contribute by doing  things like suggesting new research questions, joining research teams, and sharing exciting research results with others.

Ultimately, patient engagement in research will help create knowledge that is more likely to be relevant, adopted, and implemented, and lead to improved health outcomes.

In 2015, we started studying patient engagement in research among the retinoblastoma community. Since then, we have initiated efforts to foster patient engagement in research beyond retinoblastoma including a current study underway to examine Patient Reported Outcome Measures for paediatric ophthalmology patients.

Patient Engagement in Retinoblastoma Research:

In 2016, we established a national retinoblastoma patient engagement strategy to:

  1. Share research results with people affected by retinoblastoma (e.g., survivor, the immediate family of someone diagnosed with retinoblastoma etc.);
  2. Include a large diverse group of people affected by retinoblastoma in research; and
  3. Promote research that is created and led by people affected by retinoblastoma.

This strategy has resulted in the:

  • Retinoblastoma Research Community: People in the Canadian Retinoblastoma Community who are interested in research. To formally join the community, individuals are encouraged to sign up online (below). The Canadian Retinoblastoma  Research Community was formerly known as the Canadian Retinoblastoma Research Registry.
  • Canadian Retinoblastoma Research Advisory Board: Members of the Canadian Retinoblastoma Research Community who participate in patient partnered research and related activities and events. Members of CRRAB  draw from personal experience to promote patient partnership in research and encourage sign-up to the Canadian Retinoblastoma Research Community.

Please click the links below to find out more!