Full Name: Helen Dimaras
Academic Affiliation: University of Toronto / The Hospital for Sick Children
Position: Assistant Professor / Scientist
Abstract: Background: Retinoblastoma is a childhood eye cancer. It is curable, but patient survival remains poor in many low-and-middle-income countries. Optimal resources and expertise for retinoblastoma management have been outlined in published clinical guidelines, serving to direct health policy and practice at national, regional and institutional levels. However, the capacity of retinoblastoma treatment centers to implement such guidelines varies worldwide.
Methods: We performed a situational analysis to document resources and expertise available at hospitals that treat retinoblastoma, and to map their global distribution with retinoblastoma disease incidence. “One Retinoblastoma World Online” (www.1rbw.org) was developed to disseminate this information in an interactive and data-rich format.
Results: We documented 166 treatment centers in 56 countries. The global burden of retinoblastoma is highest in low-and-middle income countries (89%). Estimated disease incidence compared to location and capabilities of treatment centers reveals opportunities to increase capacity, collaboration and coverage in key regions.
Conclusion: The One Retinoblastoma World Online connects stakeholders and strengthens capacity to care for the global retinoblastoma population. This first-of its-kind collaboration promotes global standards of care, setting the stage for multicenter clinical trials and other research.