The 1st Chinese narcolepsy patient study report released by CHARD and Peking University

Oct 30th,2022, During the China Conference on Rare Diseases, the China Alliance for Rare Diseases(CHARD) and Peking University (the Department of Pharmacy Management and Clinical Pharmacy) officially published the 1st Chinese narcolepsy patient study report. Professor Luwen Shi at Peking University is the editor of the study. It is the first research on systemic patients with narcolepsy, aiming to provide scientific evidence of police making and reasonable allocation of health resources for policymakers by assessing the economic burden of disease and the quality of life of Chinese patients with narcolepsy.

 

Narcolepsy is a rare, chronic, debilitating neurological disorder of sleep-wake state instability. Narcolepsy is primarily characterized by excessive daytime sleepiness (EDS), cataplexy, and nocturnal sleep disturbances. The Chinese narcolepsy patient study report analyzes the basic information about sociodemographic characteristics, disease characteristics, medical experience, the present status of treatment and demand, etc. Humanities and social economy are the two aspects to evaluate the disease burden, providing scientific evidence of related policy or strategy making for Chinese patients with narcolepsy. At the same time, it offers informative basic materials for further scientific research and treatment program evaluation.