Overview of the Registry
The CRPS UK Registry database was established by the CRPS UK Clinical & Research Network in 2008 to facilitate epidemiology studies, academic and pharmaceutical clinical trials.
The CRPS UK Registry data is supervised by and remains the property of the Steering Committee. The Registry is accessed through secure Web-based software (EDGE) that is currently hosted by the University of Southampton and funded by ad hoc grants. Cambridge University Hospitals NHS Foundation Trust sponsors the Registry.
Dr. Nicholas Shenker (Consultant Rheumatologist, Addenbrooke's Hospital, Cambridge) is the Registry’s Chief Investigator and is supported by members of the Network. He delivers a weekly clinic for patients to CRPS with access to physiotherapists and occupational therapists with expertise in seeing patients with this condition. As an Honorary Fellow of the University of Cambridge, Dr Shenker is involved with a number of research studies - his current collaborations include studies in the field of genetics, MRI imaging and EEG testing, and virtual reality environments. He is the lead for the British Society for Rheumatology (BSR) Musculoskeletal Pain Specialist Interest Group, and is also Chair of the Pain Management in Inflammatory Arthritis Quality Improvement Project.
For more information about how to become a recruiting centre for the Registry, please click on 'Registry Recruiting Centres'
For more information about how to apply to access Registry data for your study, please click on 'Using the Registry in Research'
The Registry Database: Facts and Figures
Current number of patients recruited to the UK Registry – 617 (as at October 2020)
Patient follow-up data recorded over at least a 5 year period - 161
Breakdown of follow-up data:
5 years - 54 patients 8 years - 22 patients
6 years - 21 patients 9 years - 18 patients
7 years - 36 patients 10 years - 10 patients
Number of approved recruiting centres - 10
Number of ongoing applications to become recruiting centres - 0
Number of studies currently using CRPS UK Registry data – 0