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Shenker N, Goebel A, Rockett M, et al. Establishing the characteristics for patients with chronic Complex Regional Pain Syndrome: the value of the CRPS-UK Registry. Br J Pain. 2015;9(2):122-8doi: 10.1177/2049463714541423.
Shenker, N., Goebel, A., Rockett, M., Batchelor, J., Jones, G. T., Parker, R., de C Williams, A. C., & McCabe, C. (2015). Establishing the characteristics for patients with chronic Complex Regional Pain Syndrome: the value of the CRPS-UK Registry. British journal of pain, 9(2), 122-8. https://doi.org/10.1177/2049463714541423
Shenker, Nicholas, et al. "Establishing the characteristics for patients with chronic Complex Regional Pain Syndrome: the value of the CRPS-UK Registry." British journal of pain vol. 9,2 (2015): 122-8. doi: https://doi.org/10.1177/2049463714541423
Shenker N, Goebel A, Rockett M, Batchelor J, Jones GT, Parker R, de C Williams AC, McCabe C. Establishing the characteristics for patients with chronic Complex Regional Pain Syndrome: the value of the CRPS-UK Registry. Br J Pain. 2015 May;9(2):122-8. doi: 10.1177/2049463714541423. PMID: 26516567; PMCID: PMC4616964.
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Br J Pain. 2015 May;9(2):122-8. doi: 10.1177/2049463714541423.

Establishing the characteristics for patients with chronic Complex Regional Pain Syndrome: the value of the CRPS-UK Registry.

British journal of pain

Nicholas Shenker, Andreas Goebel, Mark Rockett, James Batchelor, Gareth T Jones, Richard Parker, Amanda C de C Williams, Candida McCabe

Affiliations

  1. Rheumatology Research Unit, Department of Rheumatology, Cambridge University Hospitals, Cambridge, UK.
  2. Department of Pain Medicine, Walton Centre, Liverpool, UK.
  3. Department of Anaesthetics, Derriford Hospital, Plymouth, UK.
  4. Department of ICT, University of Southampton, Southampton, UK.
  5. Epidemiology Group, Institute for Applied Health Sciences, University of Aberdeen, Aberdeen, UK.
  6. Department of Primary Care Research, University of Cambridge, Cambridge, UK.
  7. Department of Clinical, Educational & Health Psychology, University College London, London, UK.
  8. Centre for Health and Clinical Research, University of the West of England, Bristol, UK.

PMID: 26516567 PMCID: PMC4616964 DOI: 10.1177/2049463714541423

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.

CONCLUSION: CRPS-UK Registry is a validated method for actively recruiting well-characterised patients with CRPS to provide further information on the long-term outcome.

Keywords: Complex regional pain syndromes; causalgia; chronic pain; intractable; pain; reflex sympathetic dystrophy

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