Welcome to the RECODE-DCM Network!
Myelopathy.org is leading the fight for people with Degenerative Cervical Myelopathy (DCM), to build a world where people can live their lives free of the life-limiting impact of DCM and have a healthy, active, and independent future. The RECODE-DCM network is the research arm of Myelopathy.org.
Our RECODE-DCM Newsletter Team is Changing!
After all her many months of invaluable hard work, we are bidding farewell to our own Liz Roberts. Since joining Myelopathy.org over nine months ago now, Liz has been an exceptional driving force behind our newsletter, ensuring we keep you all up to date on key developments from us, our affiliates, and cutting-edge DCM research.
With Liz’s departure, we are excited to welcome a new addition to the team – Oliver Longstaff. Oliver brings with him a wealth of experience in communications and a genuine passion for supporting those affected by DCM. As our new newsletter coordinator, he will strive to uphold the standard of excellence set by Liz and ensure that our newsletter remains a source of inspiration, insights, and connection.
So, thank you Liz and welcome Oliver!
The RECODE-DCM Incubators: Progress Report
The goal of our incubators is to resolve the Top 10 Research Priorities that were identified through the AO Spine RECODE-DCM study, in which AO Spine and Myelopathy.org brought together all key stakeholder groups to pinpoint the most crucial questions in DCM.
We are forever grateful to AO Spine for boosting the momentum of the DCM research field in this way. Our international, multidisciplinary incubator teams meet regularly via Zoom to conduct research and share expertise. We sincerely thank all of our incubator members for sparing their time and energy to propel the incubators forward.
The Diagnostic Criteria incubator has now submitted a series of formative papers for review to the Global Spine Journal. These include systematic reviews of the diagnostic value of clinical symptoms, and clinically important signs and attributes in distinguishing DCM from other conditions (Dr. L. Tetreault, New York University). We are also submitting an analysis of inclusion and exclusion criteria to be utilised within DCM trials (Prof. K. Margetis, Mount Sinai). Ethical approval is now being prepared for a Delphi Consensus Process.
The Natural History incubator is currently looking to assess the current management of both asymptomatic spinal cord compression and mild DCM. Led by Dr. A. Nouri (HUG, Geneva) with the assistance of J. Brannigan (University of Cambridge), the team conducted an international survey of over 600 healthcare professionals to generate a comprehensive understanding of the existing assessment, investigation, and follow-up process in the management of DCM. Presented initially at the Global Spine Congress in May of this year, the paper is to be published shortly in Spinal Cord. The group is now completing a process to select consistent terminology, with a view to lay the foundations for investigations into the onset of DCM.
The Peri-Operative incubator is currently holding talks with the Enhanced Recovery after Surgery (ERAS) Society. Led by Caroline Treanor (Beaumont Hospital, Ireland), the team are looking to work with ERAS to develop peri-operative guidance for the management of DCM. As part of this work, ethical approval has now been submitted to undertake a survey on peri-operative care in DCM practice (Dr. H. Mee, University of Cambridge), and we have kicked off a retrospective cohort study evaluating the peri-operative care pathway (Dr. A. Vedantam, MCW & Dr. O. Moworth, University of Cambridge). We also would like to thank Prof. Chad Cook for his service as Chair of the incubator as he steps down owing to additional responsibilities at Duke University. Nominations for his replacement are currently being reviewed by Myelopathy.org.
RECODE-DCM has just published a secondary analysis of the priority-setting process, exploring whether asking a simple question like “What should be a research priority?” and cross-checking answers with current evidence to see what has been answered could be used to evaluate a knowledge translation gap.
For a deeper dive into the incubators, tune in to the March, April and May 2023 episodes of our podcast, Myelopathy Matters.
If you would like to join an incubator, please email recode@myelopathy.org.
POLYFIX-DCM Trial: An Update from the Team
The POLYFIX-DCM Trial was initiated with one purpose in mind: to determine whether surgery alone or surgery with fusion leads to better recovery for patients undergoing surgery for DCM in their spine, through a multi-site randomised control trial.
We are excited to announce that, by welcoming teams from Northern General and Royal Hallamshire hospitals in Sheffield, we have now opened up 17 different sites for this trial and 56 patients! However, as our target overall is an impressive 396 total participants, the trial is in need of your help.
If you or your institution would be interested in getting involved in this study, please reach out to Ben, the trial lead, at ben@myelopathy.org to register your interest.
Thank You for Your Interest in Our Network’s Scientific and Clinical Initiatives
RECODE-DCM by Myelopathy.org provides a unique multidisciplinary ecosystem for the global myelopathy community. We unify lived experience and professional experience, for research with relevance.
Please share this newsletter with your friends and colleagues, and encourage them to join our network.
If you have any questions, comments or suggestions, please email our project manager, Oliver Longstaff, at oliver@myelopathy.org.
For any further enquiries, please email recode@myelopathy.org.
Best wishes,
Ben Davies and the RECODE-DCM Team
#MyelopathyMatters