COMPACT Study (sponsored by the Royal United Hospitals Bath NHS Foundation Trust)
Core Outcome Measurement set for complex regional PAin syndrome Clinical sTudies
An international team of patients, clinicians and researchers was established in 2013. This research study is led by Professor Candy McCabe and Sharon Grieve from the Royal United Hospitals NHS Foundation Trust in Bath, in collaboration with colleagues from Europe, North America, South America, Israel, India, Japan, South Africa, Australia and New Zealand.
The aim of this study is to agree on a minimum core set of outcome measures which will be recommended for use in all CRPS clinical studies. Currently, it is difficult to bring research findings from many different studies together. This is because researchers may not always use the same questionnaires to measure change during a clinical study. The development of a core measurement set would make it easier to compare data to answer specific research questions agreed as internationally important and relevant for the advance of the treatment of CRPS. The core measurement set (COMPACT) was agreed through a series of workshops.
Update: December 2018. 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
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
Please click on the links below to view the COMPACT newsletters:
Issue 3 - December 2018
Issue 2 - May 2017
Issue 1 - July 2016
With grateful thanks to our funders:
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.
Previous Study Updates:
It is with great sadness that we share news of the untimely death of Professor Roberto Perez. Roberto was a wonderful friend and colleague, who was a key member of COMPACT from the outset. He contributed a huge amount to the study academically and he was always willing to share his expertise. He had a great talent at bringing people together and was always keen to encourage novice researchers. We will also remember the many happy times we shared enjoying local refreshment, after all the formal COMPACT business had concluded for the day.
He will be missed by all who have worked with him.
Recommendations for a first outcome measurement set have now been published:
Grieve S, Perez RSGM, Birklein F, Brunner F, Bruehl S, Harden RN, Packham T, Gobeil F, Haigh R, Holly J, Terkelsen A, Davies L, Lewis J, Thomassen I, Connett R, Worth T, Vatine J-J, McCabe C. Recommendations for a first Core Outcome Measurement set for complex regional PAin syndrome Clinical sTudies (COMPACT). Pain. 158(6):1083-1090
An abstract or overview of the paper can be accessed by clicking here, but a subscription to PAIN is required for access to the full paper.
The core measurement set (COMPACT) uses a number of patient-reported questionnaires to assess many aspects of CRPS. One clinician reported outcome measure captures the degree of severity of CRPS.
The international, multi-centre study to test how practical it is to collect outcome measure data using COMPACT in the CRPS population will commence shortly.
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)
This registry will contribute to an internal dataset, which will allow the comparison of data and facilitate recruitment to collaborative studies.
COMPACT members at workshop 3: Bath, January 2015
Nearly three years have flown by since the COMPACT consortium was established and a huge amount has been achieved. This update provides an overview of the progress which has been made since our first meeting in Bath in November 2013. Over the past three years, a series of workshops have been held to agree a core set of outcome measures (COMPACT) to be advocated for use in all CRPS clinical studies. We now have the first draft version of COMPACT which will be used to answer our research question "What is the clinical presentation and course of CRPS and what factors influence it?" This includes a number of patient reported questionnaires and one clinical questionnaire.
The next step is to conduct a study to test how practical it is to collect outcome measure date using COMPACT in the CRPS population. We will test COMPACT in approximately 8 different countries and in various languages. Once this is completed, we can agree the final COMPACT so it can be used by the CRPS research community as a whole.
In addition, we recently conducted an online survey to ask researchers what questionnaire outcome measures they are currently using in CRPS clinical trials. This is important information as it will enable us to assess the impact of developing COMPACT by repeating the survey in a few years time. The survey is now closed, but thank you to everyone who took part.