O'Day, RF;
Conway, RM;
Lim, LA;
Giblin, M;
Cherepanoff, S;
Joshua, A;
McKay, D;
... Barthelmes, D; + view all
(2024)
The Fight Tumour Blindness Registry: Efficient capture of high-quality real-world data in uveal melanoma.
Canadian Journal of Ophthalmology
10.1016/j.jcjo.2024.05.006.
(In press).
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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.
| Type: | Article |
|---|---|
| Title: | The Fight Tumour Blindness Registry: Efficient capture of high-quality real-world data in uveal melanoma |
| Location: | England |
| DOI: | 10.1016/j.jcjo.2024.05.006 |
| Publisher version: | https://doi.org/10.1016/j.jcjo.2024.05.006 |
| Language: | English |
| Additional information: | This version is the author accepted manuscript. For information on re-use, please refer to the publisher’s terms and conditions. |
| UCL classification: | UCL UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > Institute of Ophthalmology |
| URI: | https://discovery-pp.ucl.ac.uk/id/eprint/10195596 |
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