OBJECTIVES: To identify real-world data (RWD) sources for retinal diseases in Asia Pacific and determine access and utility for conducting evidence generation studies.

METHODS: Literature review to identify publications on RWD sources for Achromatopsia, X-Linked Retinitis Pigmentosa (XLRP), Geographic Atrophy (GA), and Wet Age-related Macular Degeneration (Wet AMD) using academic, commercial, and grey literature published between 2012-2022 (PubMed, Google etc.) Information was extracted including database type, coverage, completeness, demographics, clinical, humanistic, and economic burden, and efficacy outcomes. Databases for GA, Wet AMD, Achromatopsia, and Inherited Retinal Diseases (IRDs) with the greatest number of publications were prioritized for assessment of data access and utility. Five markets were surveyed (Australia, China, Japan, South Korea, and Taiwan).

RESULTS: 698 publications were retrieved. 106 unique data sources were identified; almost one-third cover China (31%), followed by Japan (26%), Australia (17%), South Korea (15%), and Taiwan (9%). Almost two-thirds include Wet AMD (65%), followed by GA (25%), IRD (22%), XLRP (8%), and Achromatopsia (6%). Hospital/Electronic Medical Records (EMRs) account for the largest proportion (68%), followed by population surveys (18%), insurance/claims databases (10%), and registries (4%). 40 databases were prioritized for deep-dive analysis; the most widely reported variables include diagnosis, age, gender, and visual acuity. Data reporting quality of life and indirect treatment costs were absent. Data utility, assessed by number of variables, was greatest in Australia, followed by China, South Korea, Taiwan, and Japan. Data access, assessed by number of publications, was greatest in China, followed by Australia, South Korea, Japan, and Taiwan.

CONCLUSIONS: RWD sources for retinal diseases in Asia Pacific are associated with data gaps and variable access, highlighting the importance of collaborations for comprehensive data collection and generation of real-world evidence for better understanding and management of these diseases.