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 Sia; Lindsay McGrath; William Glasson; Timothy Isaacs; Mark Gillies; Daniel Barthelmes

doi:10.1016/j.jcjo.2024.05.006

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

Can J Ophthalmol. 2024 Oct;59(5):e525-e533. doi: 10.1016/j.jcjo.2024.05.006. Epub 2024 May 26.

Authors

Roderick F O'Day¹, R Max Conway², Li-Anne Lim², Michael Giblin³, Svetlana Cherepanoff⁴, Anthony Joshua⁵, Daniel McKay⁶, John D McKenzie⁶, Lotte S Fog⁷, Peta Holly⁸, Mark Shackleton⁹, Damien Kee¹⁰, Claire Philips¹⁰, Penny McKelvie¹¹, Riyaz Bhikoo¹¹, Peter Hadden¹¹, Guy S Negretti¹², Mandeep S Sagoo¹², Bertil E Damato¹², David Sia¹³, Lindsay McGrath¹⁴, William Glasson¹⁴, Timothy Isaacs¹⁵, Mark Gillies¹⁶, Daniel Barthelmes¹⁷

Affiliations

¹ Ocular Oncology Research Unit, Centre for Eye Research Australia, Melbourne (Victoria), Australia; Department of Ocular Oncology, Royal Victorian Eye and Ear Hospital, Melbourne (Victoria), Australia. Electronic address: roderick.o'[email protected].
² Ocular Oncology Unit, Sydney Eye Hospital and The Kinghorn Cancer Centre, Sydney (New South Wales), Australia; Save Sight Institute, University of Sydney, Sydney (New South Wales), Australia.
³ Ocular Oncology Unit, Sydney Eye Hospital and The Kinghorn Cancer Centre, Sydney (New South Wales), Australia.
⁴ SydPath, Department of Anatomical Pathology, St Vincent's Hospital, Darlinghurst (New South Wales), Australia.
⁵ Kinghorn Cancer Centre, St Vincent's Hospital Sydney, Darlinghurst (New South Wales), Australia; Garvan Institute of Medical Research, Darlinghurst (New South Wales), Australia.
⁶ Ocular Oncology Research Unit, Centre for Eye Research Australia, Melbourne (Victoria), Australia; Department of Ocular Oncology, Royal Victorian Eye and Ear Hospital, Melbourne (Victoria), Australia.
⁷ Ocular Oncology Research Unit, Centre for Eye Research Australia, Melbourne (Victoria), Australia; Alfred Health, Melbourne (Victoria), Australia.
⁸ Department of Ocular Oncology, Royal Victorian Eye and Ear Hospital, Melbourne (Victoria), Australia.
⁹ Alfred Health, Melbourne (Victoria), Australia; Central Clinical School, Monash University, Melbourne (Victoria), Australia.
¹⁰ Sir Peter MacCallum Department of Oncology, University of Melbourne, Melbourne (Victoria), Australia; Department of Medical Oncology, Austin Health, Heidelberg (Victoria), Australia.
¹¹ Department of Ophthalmology, University of Auckland, Auckland, New Zealand.
¹² Department of Ocular Oncology and NIHR Biomedical Research Centre for Ophthalmology at Moorfields Eye Hospital and UCL Institute of Ophthalmology, London, United Kingdom.
¹³ Departments of Ophthalmology at the Royal Adelaide Hospital and Flinders Medical Centre, Adelaide (South Australia), Australia; The University of Adelaide, Faculty of Health and Medical Sciences, Adelaide (South Australia), Australia.
¹⁴ Queensland Ocular Oncology Service, Brisbane (Queensland), Australia.
¹⁵ University of Western Australia, Perth (Western Australia), Australia.
¹⁶ Save Sight Institute, University of Sydney, Sydney (New South Wales), Australia.
¹⁷ Save Sight Institute, University of Sydney, Sydney (New South Wales), Australia; Department of Ophthalmology, University Hospital and University of Zurich, Zurich, Switzerland.

PMID: 38810958
DOI: 10.1016/j.jcjo.2024.05.006

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.

MeSH terms

Blindness / epidemiology
Blindness / etiology
Blindness / prevention & control
Female
Humans
Male
Melanoma*
Registries*
Surveys and Questionnaires
Uveal Neoplasms* / epidemiology

Supplementary concepts

Uveal melanoma