The UK CRPS Registry

If you are a researcher and interested in using registry data for a UK ethically approved study, please contact us.

There is an application and approval process, but we accept enquiries from both commercial and non-commercial organisations.

Please note that there is a financial charge for accessing registry data, which is applicable to all studies.

Disclaimer: 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 condition 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.

We established the UK CRPS registry database for adults in 2008, with the aim of facilitating research. This includes epidemiology studies, academic research and pharmaceutical clinical trials. Cambridge University Hospitals NHS Foundation Trust is the registry sponsor, whilst all data is supervised by and remains the property of the Registry Steering Committee.

Data captured at baseline includes:

demographic information
dates of onset and diagnosis
trigger for CRPS
limbs affected
signs and symptoms (according to the Budapest criteria).

Participants are contacted annually and asked to complete a brief follow-up questionnaire. This self-reported assessment of CRPS progression helps us to track the long-term course of the condition.

Recruitment to the registry ceased in 2020, by which time more than 600 people had been enrolled. We continue to approach active participants for annual follow-ups; more than 50 people have been contributing follow-up data for a decade or more.

Our UK registry is a longitudinal research study in its own right, with an anonymised dataset available on request for research purposes. We also keep an address book of participants who are willing to be contacted about other CRPS-related research opportunities.

Facts and figures about the UK CRPS registry - reads:
618 records in total, recruited via 10 different sites. 89% of participants have completed at least one follow-up and 44% have responded a minimum of five times. 544 participants remain actively involved in the registry, 11 research studies have previously been approved to use registry data. The registry itself has been involved in three studies as a participant.

Our first registry paper (Shenker et al, 2014) was published in the British Journal of Pain. This outlined the aims of the registry, assessed the validity of initial contributed data and described the characteristics of a sample of the UK CRPS population.

Establishing the characteristics for patients

with chronic Complex Regional Pain Syndrome:

the value of the CRPS-UK Registry

We are currently analysing all data captured prior to 2024, with the aim of submitting a second paper for publication which reflects the work completed to date.

CRPS-UK registry paper Shenker et al 2014

Research studies or clinical trials involving the UK CRPS registry can be led by a Network member, or any other organisation. An application to access the data must be approved by the Registry Steering Committee.

You will need to comply with our established process for data access. The initial screening, data extraction and approach to patients is carried out by the CRPS Network Co-Ordinator, meaning that you only receive details of any patients who opt in after hearing about the study. We cannot allow you to have access to the registry data in its entirety or to directly recruit patients.

The first step is for you to download the Registry Data Access Form. This should be completed and emailed to us, along with copies of:

the full study protocol
participant information sheet
ethical approval letters (including any amendments)

Once all of this information has been received, the CRPS Network Co-Ordinator will make arrangements for the Registry Steering Committee to consider the request. As we meet infrequently, this will often be undertaken via a closed teleconference. After a decision has been made, you will be advised of the next steps.