Complex Regional Pain Syndrome (CRPS)
International Clinical Research Registry and Data Bank
We are working to establish the first international research registry and data bank for CRPS. This project builds on eight years of research conducted by a collaboration of patient partners, clinicians, academics and industry representatives. It enables access to a consistent and anonymised international set of data.
- Research conducted via the registry and data bank has the potential to improve health outcomes for the CRPS population worldwide.
- It will help researchers to understand the causes and progress of CRPS in different populations.
- Data analysis may also help with the development of future treatments or research.
The findings from the COMPACT-Q and COMPACT-C studies have enabled the final combined set of patient-reported and clinical outcome measures to be agreed. We are including these within the international registry and will recommend them for use in all future clinical studies.
- The data bank will answer a number of questions, with the initial study answering our agreed research question.
- It will also act as a springboard for further research studies.
- Approved recruiting centres will collect information from adults with a confirmed diagnosis of CRPS at the time of enrolment.
- Data collection will take place at baseline, plus a minimum of one follow-up time point.
- Participants will be asked to complete a series of questionnaires.
- Clinicians will complete the CRPS Severity Score (CSS) and a minimum of one agreed clinical outcome. Additional clinical outcome data collection will be optional for research purposes.
- All responses will be stored securely using an online data management system.
- Researchers will have access to their own contributed data free of charge. Access to anonymised data contributed by other sites will be considered on request and for a fee.
We anticipate that the new international registry will open for recruitment by 2024, but welcome preliminary expressions of interest from interested clinicians and academics.
- Are you a health professional or researcher with an expertise in CRPS?
- Do you have access to sufficient clinical resources for approaching and recruiting participants?
- Do you complete the CRPS Severity Score (CSS) as part of your routine diagnostic evaluation?
- Are you interested in potentially contributing data to this unique and exciting long-term study?
To register your interest and sign up for project email updates, please contact us: firstname.lastname@example.org