New Ghana retinoblastoma registry achieved high data quality and completeness.
Creation of a Retinoblastoma Registry in a Resource-Limited Country in Sub-Saharan Africa.
Benjamin Abaidoo … Sally Peprah
Cancer medicine · 2026
Background
Retinoblastoma (retinoblastoma) is the most common ocular tumor in young children, originating from the developing retina, with the burden remaining higher in regions of low socio-demographic index.
Purpose
To develop an retinoblastoma registry for Ghana and assess its feasibility and acceptability.
Methods
An online Research Electronic Data Capture (Research Electronic Data Capture) database was created as a registry of children diagnosed with retinoblastoma in Ghana.
70%
Results
70%
checked patient records were complete and accurate enough to trust
More results
Data were entered, aggregated, and stored in the Research Electronic Data Capture database.
Data captured included: socio-demographic and clinical information, clinical staging and systemic evaluations, histopathological risk assessment and staging, and final treatment outcomes.
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Conclusion
The registry demonstrated strong technical and operational feasibility, with efficient workflows and reliable infrastructure. High data quality and user-validated acceptability underscore its integration into routine clinical practice.