The AO Spine RECODE-DCM (Research Objectives and Common Data Elements for Degenerative Cervical Myelopathy) project aims to accelerate research to improve outcomes in DCM. This international multi-disciplinary collective brings together healthcare professionals with people living or caring for people with the disease and has already taken great strides to aid and align future discoveries in DCM by developing a research toolkit. The group is now tackling yet another barrier to progress by addressing the disunity of research groups working independently around the world.
In early 2021, the AO Spine Knowledge Forum Spinal Cord Injury launched three new incubators, with the goals of enhancing synergy between research groups, focusing knowledge discovery, and translating knowledge to improve patient outcomes.
“Research often does not cross borders. When we work together, we can progress faster and more effectively for our patients.”
These international special-interest teams will champion three of the Top 10 Research Priorities: Natural History (Priority 2), Diagnostic Criteria (Priority 3), and Peri-Operative Rehabilitation (Priority 6). Within each group, AO Spine RECODE-DCM Ambassadors will develop an action plan on how to address the research questions, raise awareness of DCM, and promote commitment from leading authorities to dedicate specific funding to the AO Spine RECODE-DCM Top 10 Research Priorities.
Ricardo Rodrigues-Pinto, orthopedic spine surgeon from Portugal and member of the Diagnostic Criteria leadership committee, says, “The opportunity to work with this amazing team of clinicians, but also patients, keeps reminding me how wonderful patients are and how important they are in our diagnoses, decision-making and in evaluating our results. In a time of artificial intelligence, navigation systems, and high-tech diagnostic procedures, it is inspiring to go back to the basics of clinical diagnosis and patient-centered care.”
Iwan Sadler, a person living with DCM in the UK, shares the passion: “Our community is full of capable and interested researchers. I believe AO Spine RECODE-DCM can be the catalyst they need to advance outcomes quickly.” Sadler now adds his valuable perspective, alongside twenty other Ambassadors, to the Diagnostic Criteria incubator, having suffered for ten years before doctors diagnosed his DCM. “Having the connection and feedback from the people living with DCM working alongside the health professionals plays a big part in the success of this study.”
Crucially, each incubator’s members represent at least four out of five AO Spine regions, exchanging perspectives and increasing synergy internationally. “Research often does not cross borders,” says Manabu Ito, orthopedic spine surgeon from Japan and an Ambassador for the Natural History incubator. “When we work together, we can progress faster and more effectively for our patients.”
Are you inspired to join the AO Spine RECODE-DCM community and learn more about this initiative? The chairs of the incubators told AO Spine what inspired them to participate.
Mark Kotter, Principal Investigator of the RECODE-DCM study, Chairperson of the Peri-Operative Rehabilitation incubator
"The biggest bottleneck at present is awareness and recognition of DCM, even amongst health professionals who are actually involved in the treatment. It starts with education.
Many individuals with DCM undergo rehabilitation; I often prescribe it for my patients. However, currently there is literally no evidence on which I can base this decision.
I agreed to chair the Peri-Operative Rehabilitation incubator because I would like to see the right people get together, form a team, identify key questions, and make progress with a tangible project. AO Spine is in a unique position to accomplish this because it provides a well-recognized platform for research, education, and mentorship.
Why should other experts join the community? We really need multi-disciplinary input. The question of physiotherapy, in particular, requires bringing together all stakeholders involved in the treatment of DCM."
James Harrop, Chairperson of the Natural History incubator
"I agreed to chair the Natural History incubator because, I believe in order to offer patients the best treatment options you must fully understand the natural history of DCM. DCM is an extremely heterogeneous problem; you can see a patient that has MRI imaging with extreme spinal cord compression and cord signal abnormality that has no symptoms, and the next patient who has minimal radiographic compression but a severe clinical myelopathy. AO Spine has the unique perspective to solve this problem because their mission is to improve patients’ quality of life, and they are truly unbiased, organized and dedicated to improving spinal care.
Why should other experts join the community? I think we should all self-reflect and ask, “If this happened to me or my family, what would I do?” Here is your opportunity to answer what is the optimal care paradigm in an unbiased manner."
Michael Fehlings, Chairperson of the Diagnostic Criteria incubator
"Despite the fact that DCM is the commonest cause of spinal cord impairment in adults, affecting up to 2% of the population, funding for DCM research is very limited. Unless funding levels improve, advancement of translational research will be slow. AO Spine has an excellent international network and a strong track record of facilitating knowledge creation and dissemination.
The mandates of the Diagnostic Criteria incubator are (a) to advance awareness globally of DCM, and (b) to develop objective, easily communicated criteria to diagnose DCM. These two objectives are critical to advance early diagnosis, which will lead to improved treatment and better clinical outcomes.
Why should other experts join the community? DCM requires multidisciplinary input, and AO Spine can facilitate these linkages. Surgical and nonsurgical clinicians, basic and clinical scientists, health care advocates and funders, and people with lived experience all have the opportunity to partner."
Visit the AO Spine RECODE-DCM community website for further details about the incubators. You will find information about the Ambassadors and participants, the projects, and educational materials about AO Spine RECODE-DCM here.
Contact the AO Spine Knowledge Forum Spinal Cord Injury research project manager, Olesja Hazenbiller ohazenbiller@aospine.org for further details, to submit research ideas, and to subscribe to the AO Spine RECODE-DCM newsletter.
