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National Prion Clinic (UK)
==History==
Prion diseases comprise Creutzfeldt-Jakob disease (CJD), Gerstmann-Sträussler-Scheinker syndrome, fatal familial insomnia and related disorders.〔Prion diseases of humans and animals: their causes and molecular basis. Collinge J. Annu Rev Neurosci. 2001;24:519-50.〕 A specialist prion disease clinic was established by Professor John Collinge at St Mary's Hospital, London, in 1997.〔http://www.nationalprionclinic.org〕 This was designated the NHS National Prion Clinic (NPC) in March 2001 by the UK Department of Health.〔NHS to open CJD clinic. http://news.bbc.co.uk/1/hi/health/1398210.stm〕〔CJD patients to receive specialist treatment at first dedicated clinic. http://www.independent.co.uk/life-style/health-and-families/health-news/cjd-patients-to-receive-specialist-treatment-at-first-dedicated-clinic-674871.html〕 In August 2004, following the relocation of the Medical Research Council (MRC) Prion Unit from Imperial College to University College London (UCL),〔http://www.prion.ucl.ac.uk〕 the NPC relocated to the National Hospital for Neurology and Neurosurgery at Queen Square,〔http://www.uclh.nhs.uk/NR/rdonlyres/213992ED-FC59-4E21-B8D8-A3B3B97FFE5A/0/NHNNbrochurefinal.pdf〕 part of the University College London Hospitals NHS Foundation Trust.〔http://www.uclh.nhs.uk/〕 The NPC is closely integrated with the MRC Prion Unit, a relationship of fundamental importance to the missions of both organisations.〔 The NPC receives UK-wide and international referrals of all forms of suspected CJD or other prion diseases.〔 It is internationally unique and has developed considerable experience in the clinical management of prion disease.〔
In addition to providing a national NHS centre of expertise for the management of all forms of CJD and other prion diseases, the clinic was established to facilitate research in both diagnostics and therapeutics including the organisation of clinical trials.〔Collinge,J, Gorham M, Hudson F, Kennedy A, Keogh G, Pal S, Rossor M, Rudge P, Siddique D, Spyer M, Thomas D, Walker S, Webb T, Wroe S, and Darbyshire J. A partially randomised patient preference trial to assess the safety and activity of quinacrine in human prion disease: the PRION-1 trial. Lancet Neurology. 2009〕 The Health Services Director at the NHS Executive wrote to all UK hospitals to inform them of the clinic, and encourage referral to it.〔Chief Executive's Bulletin (2001). http://www.publications.doh.gov.uk/cebulletin22march.htm 2001〕 The clinic liaises closely with the National CJD Surveillance Unit in Edinburgh, Scotland (NCJDSU) to ensure that both centres are aware of all UK prion disease patients.〔http://www.dh.gov.uk/en/Publicationsandstatistics/Lettersandcirculars/Dearcolleagueletters/DH_4085464〕
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