The Fight Tumour Blindness 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 SiaLindsay McGrath, William Glasson, Timothy Isaacs, Mark Gillies, Daniel Barthelmes

Research output: Contribution to journalArticlepeer-review

Abstract

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.

Original languageEnglish
JournalCanadian Journal of Ophthalmology
DOIs
Publication statusAccepted/In press - 2024

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