RECODE-DCM Newsletter Highlights (April 2024)

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.

DCM Decision Aid Study – Get Involved!

Researchers at The University of Sydney (USYD) are currently undertaking a research project to inform a future decision aid, i.e. a tool used to facilitate clinical decision making by considering the needs and preferences of patients involved, for individuals with DCM.

They are looking for both healthcare professionals and patients in this space to contribute their wealth of knowledge and experience to ensure these tools are fit for use, so we invite you to take part.

Your contributions will consist of participating in a short 20-30 minute Zoom call with the researchers, where they will take you through a series of questions, with the answers you provide helping to shape this critical tool in clinical decision making. All participants will be acknowledged in the final publication.

If you would like to get involved, please click on one of the following links to register your interest and select a time slot during which you would be available for interview.

Thank you in advance for your participation. Let’s build a life free of pain and fear through research, awareness, and support!

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, having just conducted our last meeting on January 17th. We sincerely thank all of our incubator members for sparing their time and energy to propel the incubators forward.

The Natural History incubator has just published a research paper on the results of an international survey to determine how both mild DCM and asymptomatic spinal cord compression (ASCC) are managed in clinical practice across the world. This research demonstrated that health professionals typically offer regular outpatient follow-up visits with patients, but what investigations take place during these visits varies widely. Further research is needed to define best practice and support patient care. Read more about this study.

The Diagnostic Criteria incubator has just received ethical approval from The University of Cambridge for a Delphi consensus process that would allow us to define diagnostic criteria to help diagnose and manage patients in clinical practice. Our team has also developed a survey for healthcare professionals to rate the signs and symptoms of DCM, in order to inform our diagnostic criteria. We are currently trialling this survey with members of our incubator around the world.

The Peri-Operative incubator is currently being led by Caroline Treanor, who is overseeing a workstream to develop guidelines for the peri-operative management of DCM. Here, our team is working with the Enhanced Recovery After Surgery (ERAS) Society, who seek to improve care pathways so as to help patients achieve better and earlier recovery following major surgery. Our leadership team have met twice over the past month to plan for this project and determine our next steps.

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.

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