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The Fight Tumour Blindness Registry: Efficient capture of high-quality real-world data in uveal melanoma.
O'Day, Roderick F; Conway, R Max; Lim, Li-Anne; Giblin, Michael; Cherepanoff, Svetlana; Joshua, Anthony; McKay, Daniel; McKenzie, John D; Fog, Lotte S; Holly, Peta; Shackleton, Mark; Kee, Damien; Philips, Claire; McKelvie, Penny; Bhikoo, Riyaz; Hadden, Peter; Negretti, Guy S; Sagoo, Mandeep S; Damato, Bertil E; Sia, David; McGrath, Lindsay; Glasson, William; Isaacs, Timothy; Gillies, Mark; Barthelmes, Daniel.
Affiliation
  • O'Day RF; 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'day@eyeandear.org.au.
  • Conway RM; 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.
  • Lim LA; 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.
  • Giblin M; Ocular Oncology Unit, Sydney Eye Hospital and The Kinghorn Cancer Centre, Sydney (New South Wales), Australia.
  • Cherepanoff S; SydPath, Department of Anatomical Pathology, St Vincent's Hospital, Darlinghurst (New South Wales), Australia.
  • Joshua A; Kinghorn Cancer Centre, St Vincent's Hospital Sydney, Darlinghurst (New South Wales), Australia; Garvan Institute of Medical Research, Darlinghurst (New South Wales), Australia.
  • McKay D; 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.
  • McKenzie JD; 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.
  • Fog LS; Ocular Oncology Research Unit, Centre for Eye Research Australia, Melbourne (Victoria), Australia; Alfred Health, Melbourne (Victoria), Australia.
  • Holly P; Department of Ocular Oncology, Royal Victorian Eye and Ear Hospital, Melbourne (Victoria), Australia.
  • Shackleton M; Alfred Health, Melbourne (Victoria), Australia; Central Clinical School, Monash University, Melbourne (Victoria), Australia.
  • Kee D; Sir Peter MacCallum Department of Oncology, University of Melbourne, Melbourne (Victoria), Australia; Department of Medical Oncology, Austin Health, Heidelberg (Victoria), Australia.
  • Philips C; Sir Peter MacCallum Department of Oncology, University of Melbourne, Melbourne (Victoria), Australia; Department of Medical Oncology, Austin Health, Heidelberg (Victoria), Australia.
  • McKelvie P; Department of Ophthalmology, University of Auckland, Auckland, New Zealand.
  • Bhikoo R; Department of Ophthalmology, University of Auckland, Auckland, New Zealand.
  • Hadden P; Department of Ophthalmology, University of Auckland, Auckland, New Zealand.
  • Negretti GS; Department of Ocular Oncology and NIHR Biomedical Research Centre for Ophthalmology at Moorfields Eye Hospital and UCL Institute of Ophthalmology, London, United Kingdom.
  • Sagoo MS; Department of Ocular Oncology and NIHR Biomedical Research Centre for Ophthalmology at Moorfields Eye Hospital and UCL Institute of Ophthalmology, London, United Kingdom.
  • Damato BE; Department of Ocular Oncology and NIHR Biomedical Research Centre for Ophthalmology at Moorfields Eye Hospital and UCL Institute of Ophthalmology, London, United Kingdom.
  • Sia D; 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.
  • McGrath L; Queensland Ocular Oncology Service, Brisbane (Queensland), Australia.
  • Glasson W; Queensland Ocular Oncology Service, Brisbane (Queensland), Australia.
  • Isaacs T; University of Western Australia, Perth (Western Australia), Australia.
  • Gillies M; Save Sight Institute, University of Sydney, Sydney (New South Wales), Australia.
  • Barthelmes D; Save Sight Institute, University of Sydney, Sydney (New South Wales), Australia; Department of Ophthalmology, University Hospital and University of Zurich, Zurich, Switzerland.
Can J Ophthalmol ; 59(5): e525-e533, 2024 Oct.
Article in En | MEDLINE | ID: mdl-38810958
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.
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Full text: 1 Collection: 01-internacional Database: MEDLINE Main subject: Uveal Neoplasms / Registries / Melanoma Limits: Female / Humans / Male Language: En Journal: Can J Ophthalmol Year: 2024 Type: Article
Fulltext
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PubMed Links
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Full text: 1 Collection: 01-internacional Database: MEDLINE Main subject: Uveal Neoplasms / Registries / Melanoma Limits: Female / Humans / Male Language: En Journal: Can J Ophthalmol Year: 2024 Type: Article