Development of a US-Based, Real-World, Ophthalmology Registry Based on Automated EHR Data Extraction to Support Opportunities for Clinical and Health Economics and Outcomes Research in Eyecare

OBJECTIVES: Most care for retinal diseases in the US is rendered by ophthalmologists, who record detailed clinical information on diagnoses and symptomatology, medication(s) received, procedure(s) utilized, and response(s) to treatment(s). While these data inform several key activities across the development lifecycle, they are not easily obtainable at the scale or quality required for research. Herein we describe the development of the Vestrum Health Registry, a unique source of ophthalmologic data.

METHODS: The registry automatically extracts data weekly from 75 retinal clinics that collectively employ 370 practitioners. Proprietary algorithms—developed in collaboration with data scientists and practicing retinal specialists—clean, standardize, and curate these data. The registry therefore contains high-quality longitudinal real-world data on retinal diseases from the perspective of retina specialists across the US. Available information spans the period 2015 to present, and includes patient characteristics, eye-level information, and outcomes of both disease and treatment(s) therefor, most of which is unavailable elsewhere. Participating clinicians can be contacted as units of research (e.g., physician surveys) or to enable enrolment of clinical trials and other prospective studies.

RESULTS: As of June 1^st 2024, the registry comprised 2.4 million patients. Common retinal diseases (e.g., Macular Degeneration, Diabetic eye diseases) are well-represented, with over 400,000 patients per indication and a 6-year maximum follow-up period. It also includes several clinically derived measures needed to understand and assess the patient journey through disease and response(s) to treatment(s) provided (e.g., visual acuity [98% capture], presence of retinal fluid [85%], retinal thickness [30%]).

CONCLUSIONS: The Vestrum Health Registry database provide longitudinal, near real-time, insight into many retinal diseases. This renders it unique in its ability to help improve care and outcomes for patients with retinal disease by enabling clinical, health economics and outcomes research, and market access research on retinal treatments throughout their lifecycles.