%0 Comparative Study
%T Rare disease centers for periodic paralysis: China versus the United States and United Kingdom.
%A Ke Q
%A Qi M
%A Wu W
%A Luo B
%A Hanna M
%A Herr B
%A Griggs RC
%A  
%J Muscle Nerve
%V 49
%N 2
%D Feb 2014
%M 23893386
%F 3.852
%R 10.1002/mus.23970
%X <B>BACKGROUND: </B>We have developed a rare disease center in China.<BR><B>METHODS: </B>In this study we analyzed how patients with periodic paralysis accessed centers in China vs. in the USA and UK.<BR><B>RESULTS: </B>A total of 116 patients with periodic paralysis were evaluated in Beijing and Hangzhou (2003-2012). These patients traveled long distances for outpatient specialist care without an appointment or physician referral. In contrast, at the University of Rochester in the USA, >90% of patients were referred from physicians throughout the country by identifying physician expertise or by referrals from a patient advocacy group. In the UK, a single center, supported by the National Health Service, provides assessment/genetic testing for all UK patients.<BR><B>CONCLUSIONS: </B>Rare disease centers in China require: (1) establishing a center for clinical characterization of the disease (e.g., periodic paralysis); (2) establishing a genetic diagnostic platform; (3) placing the center at a major city hospital; and (4) facilitating patient access through internet websites.