Questionnaire survey on CADASIL patients for members of the Japan Stroke Society

Abstract

Objective: The aim of this study was to obtain real-world data on medical care for patients with Cerebral Autosomal Dominant Arteriopathy with Subcortical Infarcts and Leukoencephalopathy (CADASIL) in Japan. Methods: We conducted a questionnaire survey among members of the Japan Stroke Society to investigate the number of CADASIL patients who visited each hospital between January 2019 and December 2023. Results: A total of 315 patients with CADASIL were identified. The highest number was in Osaka Prefecture (133), followed by Kyoto (52), Kumamoto (19), Kanagawa (16), and Tokyo (12). One hospital in Osaka reported 120 patients, while another in Kyoto reported 50 patients. Conclusion: This study demonstrated a concentration of CADASIL patients in a few hospitals in Japan. It also showed that there are few stroke physicians with significant clinical experience in treating CADASIL patients in other hospitals.