Priorities

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. Socio-economic 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?

The process

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.

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).

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