{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2024,8,5]],"date-time":"2024-08-05T19:12:53Z","timestamp":1722885173702},"reference-count":13,"publisher":"Wiley","issue":"2","license":[{"start":{"date-parts":[[2014,1,16]],"date-time":"2014-01-16T00:00:00Z","timestamp":1389830400000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Muscle and Nerve"],"published-print":{"date-parts":[[2014,2]]},"abstract":"<jats:title>ABSTRACT<\/jats:title><jats:p>Introduction: We have developed a rare disease center in China. Methods: In this study we analyzed how patients with periodic paralysis accessed centers in China vs. in the USA and UK. Results: A total of 116 patients with periodic paralysis were evaluated in Beijing and Hangzhou (2003\u20132012). 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, &gt;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. Conclusions: 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. <jats:italic>Muscle Nerve<\/jats:italic> <jats:bold>49<\/jats:bold>: 171\u2013174, 2014<\/jats:p>","DOI":"10.1002\/mus.23970","type":"journal-article","created":{"date-parts":[[2013,7,29]],"date-time":"2013-07-29T04:42:46Z","timestamp":1375072966000},"page":"171-174","source":"Crossref","is-referenced-by-count":3,"title":["Rare disease centers for periodic paralysis: China versus the United States and United Kingdom"],"prefix":"10.1002","volume":"49","author":[{"given":"Qing","family":"Ke","sequence":"first","affiliation":[{"name":"Department of Neurology, The First Affiliated Hospital of School of Medicine Zhejiang University 79 Qingchun Road Hangzhou 310003 China"},{"name":"University of Rochester Medical Center Rochester New York USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Ming","family":"Qi","sequence":"additional","affiliation":[{"name":"Department of Neurology, The First Affiliated Hospital of School of Medicine Zhejiang University 79 Qingchun Road Hangzhou 310003 China"},{"name":"University of Rochester Medical Center Rochester New York USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Weiping","family":"Wu","sequence":"additional","affiliation":[{"name":"Department of Neurology, General Hospital of the People's Liberation Army Beijing China"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Benyan","family":"Luo","sequence":"additional","affiliation":[{"name":"Department of Neurology, The First Affiliated Hospital of School of Medicine Zhejiang University 79 Qingchun Road Hangzhou 310003 China"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Michael","family":"Hanna","sequence":"additional","affiliation":[{"name":"MRC Centre for Neuromuscular Diseases, Department of Molecular Neuroscience, Institute of Neurology University College London London UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Barbara","family":"Herr","sequence":"additional","affiliation":[{"name":"University of Rochester Medical Center Rochester New York USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Robert C.","family":"Griggs","sequence":"additional","affiliation":[{"name":"University of Rochester Medical Center Rochester New York USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"name":"the Consortium for Investigation of Neurological Channelopathies (CINCH)","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"311","published-online":{"date-parts":[[2014,1,16]]},"reference":[{"unstructured":"Communiqu\u00e9 of the National Bureau of Statistics of People's Republic of China on major figures of the 2010 population census [1] (No. 1).National Bureau of Statistics of China2011;04 28.","key":"e_1_2_6_2_1"},{"doi-asserted-by":"crossref","unstructured":"HerdR HuYW KoenV.Improving China's health care system. 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