title: Establishing the characteristics for patients with chronic Complex Regional Pain Syndrome: the value of the CRPS-UK Registry.
abstract: OBJECTIVE
  The long-term prognosis of patients with Complex Regional Pain Syndrome (CRPS) is unknown with no reported prospective studies from the United Kingdom longer than 18 months. The CRPS-UK Network aims to study this by use of a Registry. The aims of this article are, to outline the CRPS-UK Registry, assess the validity of the data and to describe the characteristics of a sample of the UK CRPS population.
  
  
  METHODS
  A web-based CRPS-UK Registry was developed and made accessible to centres experienced in diagnosing and managing patients with CRPS. Pragmatic annual follow-up questions were agreed.
  
  
  RESULTS
  Up until July 2013, the Registry has recruited 240 patients. A blinded, validation study of 20 consecutive patients from two centres (10 each) demonstrated 95.6% completion and 99.4% accuracy of a random sample of the recorded data. These patients had chronic disease (median duration: 29 months); 72.5% were female (2.6:1), with a mean age at symptoms onset of 43 years, and were left-handed more than expected (21.8% versus 10% in the general population). Patients reported a delayed diagnosis, with the median time between symptom onset and diagnosis of 6 months. In all, 30 patients (12.5%) had multiple limb involvement and (83.3%) had a contiguous spread of CRPS.
  
  
  CONCLUSIONS
  CRPS-UK Registry is a validated method for actively recruiting well-characterised patients with CRPS to provide further information on the long-term outcome.
authors.affiliation: Rheumatology Research Unit, Department of Rheumatology, Cambridge University Hospitals, Cambridge, UK.
authors.forename: Nicholas
authors.initials: N
authors.lastname: Shenker
authors.affiliation: Department of Pain Medicine, Walton Centre, Liverpool, UK.
authors.forename: Andreas
authors.initials: A
authors.lastname: Goebel
authors.affiliation: Department of Anaesthetics, Derriford Hospital, Plymouth, UK.
authors.forename: Mark
authors.initials: M
authors.lastname: Rockett
authors.affiliation: Department of ICT, University of Southampton, Southampton, UK.
authors.forename: James
authors.initials: J
authors.lastname: Batchelor
authors.affiliation: Epidemiology Group, Institute for Applied Health Sciences, University of Aberdeen, Aberdeen, UK.
authors.forename: Gareth T
authors.initials: GT
authors.lastname: Jones
authors.affiliation: Department of Primary Care Research, University of Cambridge, Cambridge, UK.
authors.forename: Richard
authors.initials: R
authors.lastname: Parker
authors.affiliation: Department of Clinical, Educational & Health Psychology, University College London, London, UK.
authors.forename: Amanda C
authors.initials: AC
authors.lastname: de C Williams
authors.affiliation: Centre for Health and Clinical Research, University of the West of England, Bristol, UK.
authors.forename: Candida
authors.initials: C
authors.lastname: McCabe
keywords: Complex regional pain syndromes; causalgia; chronic pain; intractable; pain; reflex sympathetic dystrophy