Title: UK DR EMR users group: Report 1-real world prevalence and progression data for diabetic retinopathy for 56 211 patients from 20 United Kingdom hospital eye services

Purpose To report estimates of the prevalence and progression of diabetic retinopathy (DR) and maculopathy grades for a large cohort of patients managed by 20 UK hospital eye services (HES). Methods Structured diabetic retinopathy (DR) assessment variables were collected using one electronic medical record (EMR) system to derive pseudo-anonymised data from 20 United Kingdom hospitals to a central database. International Classification grades of DR and maculopathy for each eye and visual acuity data were extracted. Data was collected for each DR grade over a period of up to 8 years for each site. Results Data was available for 111 194 eyes from 56 211 patients. 1634 patients had bilateral proliferative retinopathy (PDR) and 1114 patients had bilateral severe diabetic macular edema (DME) according to international grading. The visual acuity in letters (mean(SD)) for international grade by eye was 72.5(16.2) for no DR with no DME, 76.3(12.9) for severe non- PDR (NPDR) with no DME, 63.2(18.4) for severe NPDR with severe DME, 72.2(15.3) PDR with no DME and 59.6(21.0) for PDR with severe DME. At time point zero, the number of patients with follow-up data to contribute was 16,275 with no DR, 24,878 with mild NPDR, 39,735 with moderate NPDR, 8,975 with severe NPDR, and 10,089 with PDR. Progression data was calculated for each eye during follow-up for both number of grade steps and to PDR (representative graph below). Conclusions This study provides contemporary estimates of the prevalence of retinopathy and associated risk of diabetic macular edema in a large cohort of patients managed by the UK hospital service. Bilateral severe macular edema, potentially amenable to anti-VEGF therapy or macular laser treatment, is present in the eyes of almost 5.8% of these patients. This information together with the derived real world DR progression rates are useful for clinicians, health-care economists, commissioners delivering diabetic eye services, and in clinical trial design. It also provides contemporary data to better inform patients about their disease and treatment options.