RECODE-DCM

Welcome to RECODE-DCM, the Research Arm of Myelopathy.org

RECODE-DCM stands for “REsearch objectives and COmmon Data Elements for Degenerative Cervical Myelopathy”.
RECODE-DCM acts as a think tank, to accelerate the acquisition and implementation of knowledge that can improve outcomes. The participants are Myelopathy.org’s community of people with DCM, alongside world leaders from diverse stakeholder groups: general practitioners, bench scientists, medical students, physiotherapists, osteopaths, occupational therapists, surgeons, healthcare economists, politicians, and more. This combination of lived experience and professional experience gives RECODE-DCM unique relevance and power.
RECODE-DCM started in 2019 as a consensus project to improve research efficiency in DCM [1]. It was conceived by Principal Investigator, Dr Mark Kotter, and Co-Principal Investigator, Dr Benjamin Davies. 
The AO Spine Spinal Cord Injury Knowledge Forum, Chaired by Dr Michael Fehlings, recognised the huge global burden of DCM. AO Spine therefore provided funding to kickstart the initiative, for which we are forever grateful.
Dr Michael Fehlings Articulates the Problem
The group recognised that existing DCM research had many shortcomings: 
studies were duplicated (they repeated the same research question)
studies were difficult to generalise (they measured different outcomes, at different time points, using different tools, and failed to account for key baseline determinants)
studies focused on aspects of the disease that were immaterial to people living with DCM (the research focus was not aligned with the needs of those with lived experience of DCM or those who care for them)
RECODE-DCM addressed these shortcomings by: 
In 2019, establishing the top unanswered research questions, ranked according to priority
In 2020, establishing a standardised set of baseline characteristics and outcomes that should be measured in DCM research
In 2020, establishing the index term and its definition
In 2022, establishing the key measurement tools to evaluate DCM in all research going forward
Watch the Video to Understand the Evolution of RECODE-DCM
None of this work would have been possible without the insight, dedication and support of AO Spine, in particular the members of their Spinal Cord Injury Knowledge Forum and their Senior Project Manager, Olesja Hazenbiller.

AO Spine kindly supported the creation of videos and podcasts with our partners at Cambridge TV, to share the important messages of RECODE-DCM with a global audience.
The participants at the Core Measurement Set consensus meeting, kindly hosted by AO Spine at the Global Spine Congress 2022 in Las Vegas. Back row, left to right, Allan Martin, Nader Fallah, Olesja Hazenbiller, Lindsay Tetreault, David Anderson, Alvaro Yanez Touzet, Timothy Boerger, Caroline Treanor. Front row, left to right, James Guest, Brian Kwon, Benjamin Davies, Mark Kotter, Lisa Petermann, Tammy Blizzard

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