title: Rare disease centers for periodic paralysis: China versus the United States and United Kingdom.
abstract: BACKGROUND
  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 (2003-2012). 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.
  
  
  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.
authors.affiliation: Department of Neurology, The First Affiliated Hospital of School of Medicine, Zhejiang University, 79 Qingchun Road, Hangzhou, 310003, China; University of Rochester Medical Center, Rochester, New York, USA.
authors.forename: Qing
authors.initials: Q
authors.lastname: Ke
authors.forename: Ming
authors.initials: M
authors.lastname: Qi
authors.forename: Weiping
authors.initials: W
authors.lastname: Wu
authors.forename: Benyan
authors.initials: B
authors.lastname: Luo
authors.forename: Michael
authors.initials: M
authors.lastname: Hanna
authors.forename: Barbara
authors.initials: B
authors.lastname: Herr
authors.forename: Robert C
authors.initials: RC
authors.lastname: Griggs
mesh_terms: D002681:China / Q000453:epidemiology; D005820:Genetic Testing; D006297:Health Services Accessibility / Q000639:trends*; D006786:Hospitals, Urban; D006801:Humans; D020514:Hypokalemic Periodic Paralysis / Q000175:diagnosis / Q000453:epidemiology* / Q000628:therapy*; D020407:Internet; D010245:Paralyses, Familial Periodic / Q000175:diagnosis / Q000453:epidemiology* / Q000628:therapy*; D035583:Rare Diseases; D012017:Referral and Consultation; D006113:United Kingdom / Q000453:epidemiology; D014481:United States / Q000453:epidemiology
keywords: Chinese specialist care; channelopathy; diagnostic center; global neurology; periodic paralysis; rare disease center