Japan Ocular Imaging Registry: a national ophthalmology real-world database

In 2017, the Japanese Ophthalmological Society (JOS) created the Japan Ocular Imaging (JOI) registry, a national database of images and clinical data in the field of ophthalmology in Japan. The JOI registry automatically transfers the information stored in the electronic medical records of each institution to the cloud storage governed by the JOS. This process adheres to Japanese laws and regulations such as the Act on the Protection of Personal Information and the relevant laws of Japan, the Ethical Guidelines for Medical and Biological Research Involving Human Subjects, and the Medical Information System Security Management Guideline of Japan. The JOI registry works closely with academia in ophthalmology, as well as the Japan Association for Medical Informatics, the Japan Ophthalmic Instrument Association, and manufacturers of ophthalmic medical devices. The collected data will be used in studies and surveys to improve the quality of ophthalmic care. The JOI registry has been created as a common asset for the entire ophthalmology field, and welcomes participation of related institutions to utilize the infrastructure to promote multicenter joint research and development. The JOI registry network intends to cover all ophthalmological facilities, including clinics. However, the project is currently being conducted with the cooperation of 22 university hospitals, one private hospital, and two health checkup facilities. As of October 2021, six facilities are connected to the JOI registry network; it comprises a total of 486,189 fundus images, 25,224 optical coherence tomography images, and 11,565 visual field results, among others, are stored in the JOI registry. This project was initially funded by a national funding agency, the Japan Agency for Medical Research and Development (AMED) (ICT Infrastructure Establishment and Implementation of Artificial Intelligence for Clinical and Medical Research, 2017-2019). The General Incorporated Association Japan Ocular Imaging Registry was established in 2019, following which the association is managing the JOI registry under the governance of the JOS. The JOI registry is aiming to become a large-scale real-world database comparable to the Intelligent Research in Sight registry of the United States.