Canadian Journal of Ophthalmology
May 2024

The Fight Tumour Blindness (FTB!) Registry: Efficient capture of high-quality real-world data in uveal melanoma

Roderick F O’Day, R Max Conway, Li-Anne Lim, Michael Giblin, Svetlana Cherepanoff, Anthony Joshua, Daniel McKay, John D McKenzie, Lotte S Fog, Peta Holly, Mark Shackleton, Damien Kee, Claire Philips, Penny McKelvie, Riyaz Bhikoo, Peter Hadden, Guy S Negretti, Mandeep S Sagoo, Bertil E Damato, David Sia, Lindsay McGrath, William Glasson, Timothy Isaacs, Mark Gillies, Daniel Barthelmes


Objective: To describe the development of a web-based data collection tool to track the management and outcomes of uveal melanoma patients.

Design: Description of a clinical registry.

Participants: Patients with uveal melanoma.

Methods: A panel of expert ocular oncologists, with input from other relevant specialties and individuals with expertise in registry development, collaborated to formulate a minimum data set to be collected to track patient centred, real-world outcomes in uveal melanoma. This data set was used to create the Fight Tumour Blindness! (FTB!) registry within Save Sight Registries.

Results: The data set to be collected includes patient demographics and medical history, baseline visit, follow-up visit including tumour treatment, metastatic staging and surveillance, pathology, and patient-reported questionnaires. The inbuilt mechanisms to ensure efficient and complete data collection are described.

Conclusions: The FTB! registry can be used to monitor outcomes for patients with uveal melanoma. It allows benchmarking of outcomes and comparisons between different clinics and countries.