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

O&#39;Day, RF; Conway, RM; Lim, LA; Giblin, M; Cherepanoff, S; Joshua, A; McKay, D; McKenzie, JD; Fog, LS; Holly, P; Shackleton, M; Kee, D; Philips, C; McKelvie, P; Bhikoo, R; Hadden, P; Negretti, GS; Sagoo, MS; Damato, BE; Sia, D; McGrath, L; Glasson, W; Isaacs, T; Gillies, M; Barthelmes, D

Author(s): O'Day, RF; Conway, RM; Lim, LA; Giblin, M; Cherepanoff, S; Joshua, A; McKay, D; McKenzie, JD; Fog, LS; Holly, P; Shackleton, M; Kee, D; Philips, C; McKelvie, P; Bhikoo, R; Hadden, P; Negretti, GS; Sagoo, MS; Damato, BE; Sia, D; McGrath, L; Glasson, W; Isaacs, T; Gillies, M; Barthelmes, D;
Details: Publication Year 2024-10,Volume 59,Issue #5,Page e525-e533
Journal Title: Canadian Journal of Ophthalmology
Publication Type: Research article
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.
Publisher: Elsevier
Keywords: Humans; *Uveal Neoplasms/epidemiology; *Melanoma; *Registries; Blindness/epidemiology/prevention & control/etiology; Female; Male; Surveys and Questionnaires
Department(s): Medical Oncology; Radiation Oncology
Publisher's Version: https://doi.org/10.1016/j.jcjo.2024.05.006
Terms of Use/Rights Notice: Refer to copyright notice on published article.

Creation Date: 2024-10-01 05:05:42

Last Modified: 2024-10-01 05:05:56