{Reference Type}: Comparative Study
{Title}: Rare disease centers for periodic paralysis: China versus the United States and United Kingdom.
{Author}: Ke Q;Qi M;Wu W;Luo B;Hanna M;Herr B;Griggs RC; ;
{Journal}: Muscle Nerve
{Volume}: 49
{Issue}: 2
{Year}: Feb 2014
{Factor}: 3.852
{DOI}: 10.1002/mus.23970
{Abstract}: <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.