Health Systems: Improved Collaboration
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?
Developing strong evidence for retinoblastoma treatment requires strong research studies. One measure of research study strength is the number of patients included in the study. For a relatively rare cancer like retinoblastoma, this means research collaboration among centers that treat retinoblastoma is vital.
Why Is This One of the Top 10 Retinoblastoma Research Priorities?
There are approximately 8,000 new cases of retinoblastoma a year, worldwide; just 25 of these are in Canada. If retinoblastoma treatment centres around the world collaborate to share data and conduct studies, the strongest research evidence can be produced. Ultimately, this will improve patient outcomes.
Personal Story
One of the most significant challenges facing research into retinoblastoma is the ability to improve collaboration between centers caring for retinoblastoma patients. As a rare and complex disease, where every patient is unique, being able to define the best treatment for each individual is vital, especially for a team working in a small center, such as mine… Collaborating and achieving agreement on the best way to treat different patients also helps us reassure families that the treatment that their children receive will be the best possible wherever in the world you happen to be.
Oncologist
Progress Towards This Priority
Ongoing Research
| Researcher | Title |
|---|---|
| B.L. Gallie | DEPICT HEALTH |
| H. Dimaras | One Retinoblastoma World Map |
| European Retinoblastoma Group |
Patient Engagement Level For This Priority
Patient Engagement Legend
Limited or Unknown Engagement. For this priority, there is limited or no evidence that patients are meaningfully engaged in research.
Some Engagement. For this priority, there is evidence that patients are meaningfully engaged in some parts of research.
Full Engagement. For this priority, there is evidence that patients are meaningfully engaged in the full spectrum of research.
In order to promote patient engagement in retinoblastoma research, we have provided an estimate of the level of patient engagement for each of the Top 10 Priorities, based on what can be discerned from the published literature. This means we may have missed some research where patients are being meaningfully engaged, because it is not reported. If you think we’ve made an error, please let us know via email.