RECODE-DCM Newsletter (October 2022)

Welcome to the RECODE-DCM Network!, the first global scientific and clinical charity dedicated to positively transforming patient outcomes in Degenerative Cervical Myelopathy (DCM), welcomes you to RECODE-DCM. This initiative started as a partnership with AO Spine, to develop a ‘research toolkit’ to accelerate and synergise research into the condition. Using this toolkit, our multi-disciplinary RECODE-DCM network aims to transform the lives of millions of people living with the daily challenge of pain, disability, and isolation.

We are dedicated to improving the outlook for people with DCM around the world, through scientific and clinical research, education, and collaboration with patients and the wider myelopathy community. Below is our latest quarterly update to learn about’s research initiatives.

The RECODE-DCM Incubator Program: What Are They Up To?

Established as a pilot program to accelerate advances in three of the Top Ten Research Priorities, the incubators have proved an extremely valuable asset to DCM research. These hard-working teams meet regularly online.

The Diagnostic Criteria Incubator is working to form diagnostic criteria. The team has been collating evidence on the frequency, sensitivity and specificity of DCM symptoms, and examination and investigation findings, with manuscripts now in preparation. Informed by this, and using expert opinion and hypothetical cases, criteria will be distilled and weighted to form the first diagnostic criteria in DCM (expected December 2023). This will then require prospective validation.

The Natural History Incubator is working towards guidelines on management of asymptomatic spinal cord compression and establishing a framework for a natural history study. The team has conducted a survey of over 600 healthcare professionals on current practice, with results under analysis.

The Peri-operative Rehabilitation Incubator is working towards clarity on non-operative management and developing an enhanced recovery pathway for patients scheduled for surgery. A global practice survey has been piloted to establish current practice and perspectives, and it is due for dissemination shortly.

If you would like to join an incubator, please contact Liz Roberts. Inspires Prize-Winning Research: Could You be the Inaugural Winner? is receiving entries for its inaugural research award for best piece of research aligned with a RECODE-DCM Top 10 Research Priority. We hope that this will stimulate high-quality research into the questions that matter most to people with DCM. Entries for the 2022 award (and £200 prize money!) close on 1st November 2022. Could your research be in the running? More details can be found here.

Input needed from the RECODE-DCM network on a Core Information Set for surgical innovation

Research conducted within the NIHR Bristol BRC is addressing a call for change by the Independent Medicines and Medical Devices Safety review, led by Baroness Cumberlege. The review highlighted fundamental deficiencies in information provision to patients being offered innovative invasive surgical procedures and devices. In collaboration with key national stakeholders, the research team has
recently finalised a ‘Core Information Set’ with required minimum baseline information to help standardise communication with patients during consultation discussions. They requested expert input from the RECODE-DCM network as part of a public consultation to assess how important the information is.

Their survey was aimed at anyone with an interest in or experience of surgery, including any health professional or member of the public.

Please contact the project lead Angus McNair with any comments or questions.

Thank you for your interest in our network’s scientific and clinical initiatives in DCM.

Working together, we can accelerate knowledge generation and knowledge translation in this common but disabling condition. Don’t forget to sign up to receive our newsletters in your inbox!

If you have any questions, comments or suggestions, please email our project manager, Liz Roberts.

Best wishes,
Dr Benjamin Davies and the RECODE-DCM Steering Committee