Cancer medicine · 2026
Creation of a Retinoblastoma Registry in a Resource-Limited Country in Sub-Saharan Africa.
СтатьяНазвание и аннотация: Перевод в очереди
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Abaidoo Benjamin, Essuman Vera Adobea, Dimaras Helen, Amissah-Arthur Kwesi Nyan, Beyuo Vera Mawusime, Amankwaa-Frempong Doreen, Ackah Peter Forson, Nimako Andrea, Ofori-Adjei Dziffa-Bella Imelda-Odille, Tagoe Naa Naamuah, Owusu-Asare Lauretta Pinamang, Essuman Yaw Akye, Arthur Isabella Perpetual, Kyeremeh Gloria Gyamaa, Oteng-Gyimah Louis, Bonsaana Gilbert Batieka, Simon Judith, Appiah-Thompson Benedicta, Addy James Fiifi, Ollennu Adolf, Renner Lorna Awo, Guure Chris, Paintsil Vivian, Peprah Sally
Аннотация
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 treatment 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 workflow integration, and correctness and clinical relevance.
CONCLUSIONS: 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.
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 treatment 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 workflow integration, and correctness and clinical relevance.
CONCLUSIONS: 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.