The Fight Tumour Blindness Registry: Efficient capture of high-quality real-world data in uveal melanoma.
Can J Ophthalmol
; 2024 May 26.
Article
em 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.
Texto completo:
1
Coleções:
01-internacional
Base de dados:
MEDLINE
Idioma:
En
Ano de publicação:
2024
Tipo de documento:
Article