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. It is hosted by the University of Southampton, supervised by a Steering Committee, sponsored by Cambridge University Hospitals NHS Foundation Trust, and funded by ad hoc grants.
The CRPS UK Registry data 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.
Dr. Nicholas Shenker (Consultant Rheumatologist, Addenbrooke's Hospital, Cambridge) is the Registry’s Chief Investigator and is supported by members of the Network. Cambridge University Hospitals NHS Foundation Trust sponsors the Registry.
The CRPS UK Registry Database
Current number of patients recruited to the UK Registry – 543 (as at 21st August 2018)
Patient follow-up data recorded over at least a 5 year period - 113
Number of current approved recruiting centres - 10
Number of ongoing applications to become recruiting centres - 0
Number of studies currently using CRPS UK Registry data – 3
About the Registry Steering Committee
The functions of the Steering Committee are to plan and supervise analyses and publications, to ensure adherence to the ‘CRPS UK Registry publication policy’ and to the ‘Guidelines for access to data from the CRPS UK Registry’, to plan the updating of the Registry, and to act as a Project Management Group for further common projects.
How to become a recruiting centre with the Registry
If you wish to become a recruiting site to the Registry, please contact Lisa Buckle (details below) in the first instance. The Registry is a pre-HRA study, so you will need to apply for local Ethics approval in order to be able to contribute data. If you need further advice regarding this, your local R&D department will be able to seek guidance from Central Ethics.
How to Register your Trial with the Registry
Data held on the CRPS UK Registry database can be accessed by any study approved by the Registry Steering Committee.
To apply for access to use Registry data for your research study, please refer to the guidelines and terms of reference. Please note: patient diagnostic criteria is only recorded at the point of assessment. Given the longevity of the study, the Registry cannot guarantee if patients still have CRPS. This applies to those recorded as CRPS NOS (not otherwise specified) or those who consider themselves recovered/report that their CRPS has resolved since being recruited. It is your responsibility as the site accessing the data to screen out these patients as part of your study recruitment process.
Completed applications should be sent in the first instance for the attention of Lisa Buckle at the address below.
Data access and publication guidelines
Guidelines for access to data from the CRPS UK Registry
Terms of reference CRPS UK Registry Steering Committee
Please click here for a list of collaborating centres.
For further information, please contact:
CRPS Network UK Administrator
Royal National Hospital for Rheumatic Diseases
Upper Borough Walls
Tel: 01225 473479
Please click here for a list of CRPS Network UK Committee Members.