There are currently two non-commercial studies that are using Registry data or are being supported by the Network - a brief summary of each is listed below:
- Investigating the brain networks underlying altered body perceptions and related pain (sponsored by the University of the West of England) - this study is funded by Versus Arthritis and builds on work previously undertaken as part of MIRAGE. The purpose of the study is to find out more about the brain activity when someone is experiencing a visual illusion and how different regions of the brain communicate with each other. People with CRPS or hand osteoarthritis, along with health volunteers, are being recruited to compare the brain activity of people in pain to those without pain. This will enable further investigation of how differences in the brain networks are related to alterations in the way that pain patients perceive their affected limb
- Core Outcome Measurement set for complex regional PAin syndrome Clinical sTudies (COMPACT) (sponsored by the Royal United Hospitals Bath NHS Foundation Trust) - the initial work to agree an international minimum core set of outcome measures for use in all CRPS clinical studies was completed and published in 2017. COMPACT is now divided into two further studies:
COMPACT-Q (Questionnaire) - a feasibility study to test the practicalities of collecting patient-reported data from an international population, using the our agreed core measurement set. The study involves capturing patient-reported data via questionnaires at baseline and six-month follow-up. An electronic data management system is being tested to record the data. COMPACT is being tested in approximately 8 different countries and in various languages. Once this is completed, the final COMPACT can be agreed so that it can be used by the CRPS research community as a whole
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. Data from electronic surveys will be analysed and discussed at an international workshop in the autumn, after which the proposed core clinical outcome measures will be finalised.
Please click on the links below to view the COMPACT newsletters:
Issue 4 - will be coming later in 2019 .........
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.