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PROGRAMS & PUBLICATIONS
INTERNATIONAL CRPS PATIENT REGISTRY
The IRC and the COMPACT collaboration are working toward establishing an international registry of CRPS patient data that will provide researchers with access to a large and consistent international data set. This will include secure and permitted demographic data and contact information for approved research projects. These data will be collected and managed using an electronic data management system. For more information, email ruh-tr.compact@nhs.net.
ROBERTO PEREZ BIENNIAL TRIBUTE & LECTURESHIP
The IRC, in collaboration with the Reflex Sympathetic Dystrophy Syndrome Association (RSDSA), held its inaugural biennial Lectureship Program in Toronto in 2022, to honor Professor Roberto Perez, an extraordinary researcher on complex regional pain syndrome (CRPS). The next event will take place in Amsterdam in August 2024. Learn more here.
The CRPS Severity Score (CSS) is a tool to quantify clinical features associated with CRPS based on the presence/absence of 16 clinically-assessed signs (8) and symptoms (8).It is a continuous outcome measure that corresponds with and complements the dichotomous (yes/no) IASP diagnostic criteria for CRPS (the "Budapest criteria"). The CSS is FREE to IRC members and available to license for clinical trials and industry use. For more information, contact crpsconsortium@gmail.com.
CRPS SEVERITY SCORE (CSS)
Free for IRC members for academic use!
Measures Licensed or Promoted by the IRC:
CORE OUTCOME MEASUREMENT FOR CRPS CLINICAL STUDIES (C.O.M.P.A.C.T.)
This study developed a minimum core set of patient-reported outcome measures to be recommended for use in all CRPS clinical studies. The work on the symptom based outcomes (COMPACTs) was completed and published in 2017 and is in feasibility assessment. The collaboration is currently validating the clinical data core (COMPACTc). For more information, email ruh-tr.compact@nhs.net.
There are several other relevant measures owned and managed by the IRC (e.g. Occupational Status Measure, ‘True’ Functional Outcomes Measure, Medication Quantification Scale), all free to use by members . For more information, email crpsconsortium@gmail.com.
ON-GOING RESEARCH
In collaboration with four different sites in Europe, we’re taking the Budapest Criteria to the next level by researching subsets of CRPS, the first of which will be warm versus cold. A protocol will be developed so that anybody, anywhere, can start looking more closely at subsets, and executing trials to achieve statistically relevant results. Read more about our subtype research here.
The IRC also assists the RSDSA to fund a variety of pilots and preliminary data research. See a list of their funded projects here.