A review of ophthalmic registries in Africa – The shortage and importance

Abstract

BACKGROUND: Clinical registries systematically collect standardized information for pre-defined purposes on patients with a particular condition of interest. The characteristics and quantity of ophthalmic registries in Africa are unclear.
This study aimed to quantify ophthalmic clinical registries in African countries from published literature, and to supply an overview of the features and study outcomes of these registries. METHODS: A systematic search of the EMBASE, PubMed, and Web of Science databases was conducted to find ophthalmology clinical registries in Africa without time and language limitations. Relevant data elements about registry characteristics, nature, methodology, and outcomes were extracted for each individual registry identified.

RESULTS: Six clinical eye registries were found with no substantial growth over time. The most common condition captured is ocular tumors (n=3), of which two were retinoblastoma-specific registries. Five of them were focused on retinal diseases and one on blindness and low vision. None addressed cataracts and glaucoma. A third of the registries originated outside Africa, and one was multinational. Only three African countries produced a registry data set, with South Africa having the majority of the registries (n=3), followed by Egypt (n=2), and Ghana (n=1). Ophthalmic registries in Africa are used to study the epidemiologic features of ocular diseases, treatment outcomes, and genetic analysis.

CONCLUSIONS: The potential for clinical eye registries has not been adequately harnessed in Africa, as only a few ophthalmic registries exist. Findings from this study may help inform the planning and implementation of future ophthalmic registries and suggest focus areas that have not received due attention.