The first Russian register of patients with neovascular age-related macular degeneration: a real-world clinical study

Purpose: data analysis of Russia’s first register of neovascular age-related macular degeneration (nAMD) — a web-based system for clinical monitoring of nAMD patients designed to collect and accumulate the data on such patients, their demographic, social and clinical characteristics, on the existing practice of treating nAMD, assessing the effectiveness of anti-VEGF therapy and the burden inflicted by the disease. Material and methods. A non-interventional, multicenter prospective study (CRTH258ARU01) was undertaken, which involved primary collection and reuse of data. The study is referred to as “the Russian register of patients with neovascular age-related macular degeneration”. The patients’ case histories served as the primary source of information as the data contained therein were entered by the doctors into electronic individual registration cards (eIRC). The eIRC were used remotely for dynamic clinical observations and data analysis. 61 ophthalmologists from 34 Russia’s scientific or medical organizations engaged in diagnosing, follow-up and treatment of nAMD patients contributed to the register. The data for the register were collected from December 20, 2020 to December 5, 2022. The register has data on 2665 patients (3460 eyes). Results. The mean age (± standard deviation) of patients at the time of inclusion in the registry was 73.0 ± 8.8 years; the majority of patients (66.2%) were female. The average yearly number of follow-up visits per patient was 3.4 ± 2.7, while the average yearly number of injections of anti-VEGF drugs per eye was 2.0 ± 1.7. Conclusion. With the creation of the register, the main goals of the study have been achieved. On the other hand, the register showed that a significant share of nAMD patients/eyes evaded medical observation, and that the patients’ adherence to treatment was insufficient, which had a notable negative impact on the results of therapy in real clinical practice

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