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

Abstract

Background: Retinoblastoma (RB) 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. A registry of RB is essential for creating effective referral networks for evaluating treatment patterns and contributing to the global pool of knowledge. Aim: To develop an RB registry for Ghana and assess its feasibility and acceptability. Methods: An online REDCap (Research Electronic Data Capture) database was created as a registry of children diagnosed with RB in Ghana. Data completeness across core variables was analyzed and presented as a percentage. Technical, operational feasibility, and acceptability of the registry were assessed. Qualitative in- depth interviews were conducted with 2 users from each center to assess acceptability. At each treatment center, a registry lead was trained to enter data into the REDCap database. Results: Data were entered, aggregated, and stored in the REDCap database. Data captured included: socio- demographic and clinical information, clinical staging and systemic evaluations, histopathological risk assessment and staging, and final treat ment outcomes. With reliable hardware performance, safe software features, and steady network connectivity backed by offline caching, the registry proved technically and operationally feasible. The average data entry time was 15 min, and the data quality was over 70%. Acceptability was emphasized in user interviews by themes of completeness and data quality, timeliness and work flow integration, and correctness and clinical relevance. Conclusions: The registry demonstrated strong technical and operational feasibility, with efficient workflows and reliable infra structure. High data quality and user- validated acceptability underscore its integration into routine clinical practice.