AO Spine RECODE-DCM
meets global burden of DCM

The top ten research priorities published

Degenerative Cervical Myelopathy (DCM) is the number one cause of spinal cord impairment globally, affecting as many as 2% of adult populations. Despite treatment, less than 5% of people with DCM make a full recovery. Many will have life-long disability and some of the lowest quality of life scores for long-term conditions. To change this and to accelerate urgently required research advances, AO Spine is proud to launch the top ten research priorities for DCM.

The AO Spine Research Objectives and Common Data Elements for DCM (RECODE-DCM) is an international initiative to accelerate knowledge discovery and improve outcomes in DCM. The top ten unanswered research questions for DCM are the first incredible achievement for the initiative. These were gathered and prioritized through a wide consultation and consensus process, set up as a James Lind Alliance Priority Setting Partnership. (1)

The top ten research priorities for DCM

  1. Raising awareness: What strategies can increase awareness and understanding of DMC amongst healthcare professionals and the public? Can these strategies help improve timely diagnosis and management of DCM?
  2. Natural history: What is the natural history of DCM? What is the relationship between DCM and asymptomatic spinal cord compression or canal stenosis? What factors influence the natural history of the disease?
  3. Diagnostic criteria: What are the diagnostic criteria of DCM? What is the role of imaging and when should imaging be used in the assessment of DCM?
  4. Assessment and monitoring What assessment tools can be used to evaluate functional impairment, disability and quality of life in people with DCM? What instruments, tools or methods can be used or developed to monitor people with DCM for disease progression or improvement either before or after surgical treatment?
  5. Pathophysiology: What is the pathophysiology of DCM? What are the mechanisms of neurological injury and the molecular and anatomical consequences?
  6. Rehabilitation: What is the role of rehabilitation following surgery for DCM? Can structured postoperative rehabilitation improve outcome following surgery for DCM? What are the most effective strategies?
  7. Novel therapies: Can novel therapies, including stem-cell, gene, pharmacological and neuroprotective therapies, improve the health and wellbeing of people living with DCM and slow down disease progression?
  8. Socioeconomic impact: What is the socio-economic impact of DCM? (The financial impact of living with DCM to the individual, their supporters, and society as a whole).
  9. Imaging techniques What is the role of dynamic or novel imaging techniques and neurophysiology in the assessment of DCM?
  10. Individualizing surgery Are there clinical and imaging factors that can help a surgeon select who should undergo surgical decompression in the setting of DCM? At what stage of the disease is surgery the preferred management strategy
We have the potential to change how people with DCM are diagnosed and treated in the future.

The process brought together insights from all stakeholders, surgeons, health professionals, and people living with DCM, to be sure the questions represent what matters most.

"Now that we have identified the priorities, we need the international researcher community and the funders to step up to the challenge," Principal Investigator (PI) Mark Kotter says. "We have the potential to change how people with DCM are diagnosed and treated in the future."

Become an AO Spine RECODE-DCM Ambassador

This study group is exceptional in its united commitment and passion to take forward these research questions.

Brian Kwon, Alexander Vaccaro, James Harrop, Michael Fehling, James Milligan, Iwan Sadler, and the entire study group share the sentiment that this study is groundbreaking and can make a difference. “This study group is exceptional in its united commitment and passion to take forward these research questions," the JLA Chairperson for the Partnership Toto Gronlund observed.

"Each priority will have a panel of ambassadors, who will be key members of the global initiative. They will promote engagement, raise awareness and understanding of DCM and if interested, answer the question themselves," Co-PI Benjamin Davies explains.

If you are interested in becoming an AO Spine RECODE-DCM Ambassador, contact AO Spine Research Project Manager Olesja Hazenbiller on ohazenbiller@aospine.org for more details.

The next task for the AO Spine RECODE-DCM study group will be to define a standardized set of disease measurements that should be included in all future DCM research, and reach a consensus on the definition of DCM. This will promote comparability amongst studies and make sure the definition of DCM is suitable for establishment of a Medical Subject Headings (MeSH) index term.

"Together we are in a unique position to improve the lives of people with DCM and clinical care," says AO Spine Research Project Manager Olesja Hazenbiller. AO Spine will actively participate and keep monitoring the uptake of the study questions and publishing results from the priority topics to make sure the outcomes are translated into research and into clinical practice. AO Spine envisions that in some years' time, we will have answers to all ten priorities.

The final consensus meeting took place in New York in November 2019.
(1) The process adhered to the JLA methodology: 3'404 research ideas were gathered from 429 individuals (231 Surgeons, 99 Healthcare Professionals (HCP), 99 People with DCM or their supporters) using an online survey. These were refined to produce 74 unanswered summary questions, which were prioritized in a second survey by 417 participants (214 Surgeons, 310 HCP, 107 People with DCM or their supporters). The top 7 unique questions per stakeholder group (20 questions) and a further 6 questions selected by the AO Spine RECODE Steering Committee, entered a face-to-face consensus meeting in New York. This was attended by 25 individuals (7 Surgeons, 6 HCP, 11 People with DCM and 1 Supporter) where the top 10 priorities for research were agreed (panel).

Newsletter 25 | May 2020

www.aospine.com | info@aospine.org
Copyright © 2020 AO Foundation. All rights reserved.