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

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