Creation of a Retinoblastoma Registry in a Resource-Limited Country in Sub-Saharan Africa.

StudyCancer medicine· Jul 2026

Creation of a Retinoblastoma Registry in a Resource-Limited Country in Sub-Saharan Africa.

Benjamin Abaidoo, Vera Adobea Essuman, Helen Dimaras … Sally Peprah

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Ocular OncologyStudyClinical practiceQ1IF 3.6

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 · Jul 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.

Creation of a Retinoblastoma Registry in a Resource-Limited Country in Sub-Saharan Africa.

Creation of a Retinoblastoma Registry in a Resource-Limited Country in Sub-Saharan Africa.

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