Thank you for being part of the RECODE-DCM community
Myelopathy.org, the first global scientific and clinical charity dedicated to positively transforming patient outcomes in Degenerative Cervical Myelopathy (DCM), welcomes you to RECODE-DCM, the research arm of the charity.
DCM is the world’s number one cause of spinal cord injury in adults, but awareness among healthcare professionals and the general public is shockingly low. RECODE-DCM acts as a think tank, bringing together people living and working with DCM to raise awareness and solve key questions in this under-served, slow-motion spinal cord injury.
Our mission is to improve the outlook for people with DCM, through scientific and clinical research, education, and collaboration with patients and the wider myelopathy community. Thank you for your support!
The RECODE-DCM incubators: progress report
Throughout 2022, the incubator groups have been working hard to solve key questions in DCM. These multi-disciplinary teams, made up of healthcare professionals as well as people living with DCM, meet regularly via Zoom to conduct research and share expertise. We are indebted to all of the participants for their invaluable individual perspectives, their colossal combined brainpower, and their enthusiastic commitment to the cause.
The Diagnostic Criteria incubator is working to formulate reliable diagnostic criteria. Recognising that time is spine, we are committed to diagnosing DCM at an early stage of progression, which vastly improves outcomes. The team has extensively reviewed the frequency, sensitivity and specificity of multiple symptoms and signs. These criteria will be distilled down to form the first ever set of diagnostic criteria for the condition.
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 now under analysis.
The Perioperative Rehabilitation incubator is working towards clarity on non-operative management and developing an enhanced recovery pathway for patients prior to, during, and after surgery. A major milestone has been reached with the dissemination of the first ever global survey of current practice. From these results, we will establish a baseline to enable us to test future interventions. If you have lived experience with DCM, or are a healthcare practitioner working with DCM, please help us by filling in this 15-minute survey. Thank you.
If you would like to join an incubator, please contact liz@myelopathy.org.
Remote monitoring and triage of DCM using a mobile phone?
As 2022 draws to a close, we are delighted to share a concept called MoveMed, which has been in development for a few years. This is a smartphone application which can offer more detailed, frequent and remote assessment of neuromuscular disease. Dr Benjamin Davies and his co-developer, Alvaro Yanez, are working hard to bring this into the clinic, with the recent launch of two clinical trials, and two more in setup. Anyone with a neurological condition is invited to put the app through its paces, using our online testing study EMPOWER.
Thank you for your interest in our scientific and clinical initiatives
The impact of the RECODE-DCM community lies in its diversity. We welcome expertise from the full spectrum including general practitioners, bench scientists, medical students, physiotherapists, osteopaths, occupational therapists, surgeons, healthcare economists, politicians, journalists, people with lived experience of DCM and those who care for them.
Let’s make 2023 a high-impact year for our unique RECODE-DCM think tank. Please boost our impact by sharing this newsletter among your DCM networks and encouraging new sign-ups.
Myelopathy matters. Working together, we will rise to the challenge of understanding and preventing this common but disabling, progressive slow-motion spinal cord injury. We would hugely appreciate your kind support, to enable our charity to grow.
If you have any questions, comments or suggestions, please email our project manager Liz Roberts at liz@myelopathy.org.
Best wishes,
Ben and the RECODE-DCM Team