There are currently no non-commercial studies that are using Registry data, but there is one that being supported by the Network - a brief summary is listed below:
- Core Outcome Measurement set for complex regional PAin syndrome Clinical sTudies (COMPACT) (sponsored by the Royal United Hospitals Bath NHS Foundation Trust). This is divided into two further studies:
COMPACT-Q (Questionnaire) - a feasibility study to test the practicalities of collecting patient-reported research data using a core set of questionnaires. We are also testing an electronic data capture system to collect and manage the COMPACT data. Currently, it is difficult to bring research findings from many different studies together because researchers may not always use the same questionnaires. We therefore have limited evidence on the causes, course and optimum management of CRPS. In our previous work, an international group of patients, clinicians, researchers and industry representatives agreed a minimum set of questionnaires for use in future CRPS clinical studies in adults. It is the process of data collection, via these questionnaires, that we are testing. Eight international research centres are taking part in this study. The Royal United Hospitals Bath NHS Foundation Trust is the lead centre. UK recruitment will close at the end of 2019.
Adults with CRPS are recruited at any point in their treatment pathway. Patients are asked to complete the set of COMPACT questionnaires on two occasions; the first on paper at baseline, and the second six months later either on paper or using an online version. On the second occasion, patients are invited to provide questionnaire feedback on their experience of completing COMPACT. Clinicians will use an electronic questionnaire to feed back their experience of data collection.
The study protocol was recently published in the journal Musculoskeletal Care. The results of this study will inform the final version of COMPACT and the data collection process, which we will recommend for use in future CRPS studies. Using COMPACT in the future will make it easier to compare data across studies. This has long-term importance for the advancement of our understanding and treatment of CRPS.
COMPACT-C (Clinical) - an electronic Delphi study to define the core clinical outcome measures. This study is focused on the outcomes directly measured by clinicians or researchers, not the things that patients tell us. Participants were asked to complete two rounds of an electronic survey. They were asked to review a list of clinical outcomes that we know are currently used in CRPS research, and to rate the scientific relevance of each one in relation to the question: What is the clinical presentation and course of CRPS, and what factors influence it? Data from the electronic surveys were analysed and discussed at an international workshop in 2019. Suggestions from the resulting discussions are now being reviewed and will inform a minimum core clinician-reported dataset.
Please click on the links below to view the COMPACT newsletters:
Issue 3 - December 2018
Issue 2 - May 2017
Issue 1 - July 2016
While we are setting up COMPACT, it is important that researchers seek permission to use some of the questionnaire outcome measures within the core measurement set (COMPACT). In addition, specific standard permissions and procedures may be required when wishing to translate the questionnaire outcome measures. It is the researcher's responsibility to ensure that all the necessary permissions are in place. We will let you know when you can access COMPACT from us directly.
We wish to maintain a register of all researchers using COMPACT. If you are using COMPACT, please email firstname.lastname@example.org and include: Title of the study, Chief Investigator, Lead Site. Please state if you are using the COMPACT patient-reported questionnaire set alone, or with the clinician reported CRPS Severity Score (CSS)
With grateful thanks to our funders for the COMPACT study: The Balgrist Foundation (Balgrist University Hospital, Zurich Switzerland), the Dutch National CRPS Patient Organisation, SUVA: Swiss National Accident Insurance Fund, RSDSA: Reflex Sympathetic Dystrophy Syndrome Association (Connecticut, USA), the Royal United Hospitals Bath NHS Foundation Trust Charitable Funds.