Using the Registry in Research
Research studies or clinical trials involving the CRPS UK Registry can be led either by a Network member or any other organisation (including both non-commercial and commercial studies), providing that the application to access the data has been approved by the Registry Steering Committee.
This can be without the explicit consent of the individual collaborating centres, however all members of the Working Group that provide data should be informed of any analysis being carried out on the Registry data.
How to Register your Trial with the Registry
To apply for access to use Registry data for your research study, 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 Administrator, 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 firstname.lastname@example.org, along with a copy of the study’s full protocol, participant information sheet, and ethical approval letters (including any amendments).
Once all of this information has been received, the CRPS Network Administrator 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.
There is a financial charge for accessing Registry data for both non-commercial and commercial studies.
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.
Data access and publication guidelines
Patient Participation in Research
You will not be eligible to take part in a study unless you have already consented to be part of the CRPS UK Registry, or the study team are recruiting directly via other methods.
In line with the General Data Protection Regulations (GDPR) 2018, the NHS Health Research Authority (HRA) has published information for patients relating to health and social care research. This can be accessed from their website HERE
The "Be Part of Research" website also helps you to find out about health and social care research that is taking place across the UK. It enables you to search for any studies by location or by health condition - https://bepartofresearch.nihr.ac.uk. It is run by the National Institute for Health Research, which is the research 'wing' of the NHS.