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 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 trials. 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 trial. 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) will be agreed through a series of workshops, with the first held in November 2013.
There are no participants taking part in this research study.
Update (September 2016)
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 trials. 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 complete, we can agree the final COMPACT so it can be used by the CRPS research community as a whole.
Please click here to view a copy of the latest edition of the COMPACT newsletter.
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.
We are delighted to announce that a research paper entitled "Recommendations for a first Core Outcome Measurement set for complex regional PAin syndrome Clinical sTudies (COMPACT) has been accepted by PAIN - a renowned journal produced by the International Association for the Study of Pain (IASP).
The full paper is available online through PAIN, but a journal membership log-in is required to access this. We are restricted by the publisher from making the paper freely available, but we will be adding a short summary of the paper's recommendations to this website page soon.
To access the full paper, please go to http://journals.lww.com/pain/Abstract/publishahead/Recommendations_for_a_first_Core_Outcome.99307.aspx
With grateful thanks to our funders: The Balgrist Foundation (Balgrist University Hospital, Zurich, Switzerland) and the Dutch National CRPS Patient Organisation, Netherlands.