One RB World Online: A Virtual Retinoblastoma Clinic

Helen DIMARAS, The Hospital for Sick Children, Canada

1 The Department of Ophthalmology, The Hospital for Sick Children, Toronto, ON, Canada
2 The Department of Ophthalmology, Faculty of Medicine, The University of Toronto, Toronto, ON, Canada
3 The Division of Clinical Public Health, Dalla Lana School of Public Health, The University of Toronto, Toronto, ON, Canada
4 The Department of Human Pathology, College of Health Sciences, The University of Nairobi,

Purpose: Retinoblastoma (childhood eye cancer) is curable, but outcomes remain poor in low-and-middle-income countries. Optimal resources and expertise for retinoblastoma management have been outlined in published clinical guidelines, and serve as a guide to inform health policy, at national, regional and institutional levels. We conducted a situational analysis of resources and expertise available at key retinoblastoma treatment centers worldhide, in an attempt to inform systems of patient referral, educational capacity initiatives, and enhance patient care. 

Methods: We conducted a survey of Global Retinoblastoma Treatment Centers to identify and document expertise and resources available for the care of children with retinoblastoma worldwide. An online platform was developed to disseminate this information in an interactive and data-rich format (

Results: The virtual clinic connects patient families to caregivers, and documents data on 166 centers in 56 countries. Survey functionality allows further data collection and updates. Knowledge of where and how retinoblastoma children are managed worldwide provides an efficient and rapid path for parents to access urgent care. The website indicates the closest expert center and all the contacts. Paths of referral and multicenter co-management aim to keep the children close to home while optimizing access to advanced therapies when needed. Estimated incidence vs location and capabilities of treatment centers reveals opportunities to increase capacity, collaboration and coverage in various regions. 

Conclusions: The One Retinoblastoma World Virtual Clinic 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, thereby accelerating the translation of results from lab to clinic.