We asked, “What questions about retinoblastoma would you like to see answered by research?“
Retinoblastoma patients, families, health professionals, and researchers from across Canada were invited to answer, “What questions about retinoblastoma would you like to see answered by research?” Over 100 responses were submitted. Responses were then collated and ranked by a Steering Committee comprised of patients, families, health professionals, and researchers to arrive at 30 questions. An in-person workshop was held in December 2017 to discuss and rank the 30 questions. From this meeting, patients, families, health professionals, and researchers jointly arrived at the Top 10 Retinoblastoma Research Priorities in Canada.
Download a PDF copy of the CRRAB PamphletOur Priorities
Detection
- How to increase early diagnosis of retinoblastoma (i.e., decrease age or stage at diagnosis)?
- What second cancer screening is optimal for heritable retinoblastoma survivors (including whole body magnetic resonance imaging)?
Healthy Living
- How to provide culturally competent social, emotional and psychological support to retinoblastoma patients, survivors, parents and families (at diagnosis and beyond)?
- What are the risk factors for second cancers in heritable retinoblastoma survivors and, in turn, what do heritable retinoblastoma survivors need to know about living well and minimizing risk of second cancers?
Health Systems
- What is the optimal follow-up (including ophthalmological and oncological) for heritable retinoblastoma patients and survivors (by diagnosis and treatment) and how can we ensure this is provided to all?
- How to improve collaboration across the different top centers caring for Retinoblastoma: forming an international consortium, a unified registry, and combined trials, instead of the current air of competition?
- How to provide a detailed pathway of care or plan, outlining treatment and follow-up, to retinoblastoma patients and families?
- How can optimal retinoblastoma access to care be delivered in low-resource settings (including rural and remote communities)?
Treatment & Support
- What is the effect of enucleation and vision loss on retinoblastoma survivors?
- Prospective retinoblastoma treatment studies with long-term follow-up.
As a mom of an RB patient, I had ideas of ways to improve retinoblastoma care. I thought it would be great to have more support for parents dealing with the diagnosis and a clear direction on how to navigate the different systems and teams that deal with a retinoblastoma patient. I even wondered if it is possible to treat the genetic mutation so it can no longer be passed on to the offspring. I knew I was struggling with these topics and I knew other parents were struggling as well.
By participating in a priority setting project, I was able to connect with others who also cared about the direction that retinoblastoma research was going. These were other parents, survivors, researchers, and health professionals who also had ideas on where research should be focused. By listening to each other and discussing the different questions which were brought to us to rank, we were able to convince others why we felt like certain priorities were important to focus on. This discussion offered different points of view and opened people’s eyes to topics that were important to other members of the retinoblastoma community.
It is important to set the research priorities with a collaboration with patients, researchers, and health professionals so we can all agree on the most important areas of care that need to be addressed.
RB Parent