[Registry-based research in ophthalmology]

Abstract

Medical registries and registry studies are frequently used for health services research as they represent a valuable means of capturing real-life data. Registry studies are particularly suitable for rare diseases for which epidemiological population-based or randomized controlled clinical studies are difficult. The are many examples of successful medical registries that have not only contributed to both epidemiological and clinical research, but which have also improved health service delivery. Only few ophthalmological medical registries are currently available. For non-infectious uveitis in children and adolescents with juvenile idiopathic arthritis (JIA), a rare disease entity, there is a need for data on, e.g., treatment, long-term outcomes, and risk factors for progression. The advantages for this disease of a registry with uveitis module from which numerous scientific publications and guidelines have been derived has been proven. Thus, we use the example of non-infectious uveitis to discuss the benefits of registries for other areas of ophthalmology.

Keywords: Health care research; Juvenile idiopathic arthritis; Rare diseases; Registries; Uveitis.