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? 
The “natural history” of a disease means the way in which the disease starts and the way in which the disease evolves in the absence of treatment.
This uncertainty creates many challenges for clinical care. For example, at early stages of the disease (when symptoms are mild), who should receive surgery? Early surgery is associated with greater recovery, but it carries risk, and mild symptoms may remain stable. Further, cervical spinal cord compression on MRI is ~10x more likely to be “incidental”; that is, seen in people without any symptoms of Degenerative Cervical Myelopathy (DCM). Of these, only ~10% go on to develop DCM over time . This means that we cannot currently identify who will go on to develop DCM, even from those identified at risk . Answering this question could enable ultra-early treatment before lasting injury has occurred.
The impact of answering this question can be seen by looking at the field of stroke . Fifty years ago, treatment for stroke was reactive. Today, care programmes identify those at risk and offer treatment to prevent strokes. Unlocking the natural history of stroke was critical to enabling this.
How Is Myelopathy.org and RECODE-DCM Working to Address this Priority?
The Natural History Incubator
AO Spine provided funding to kickstart a global incubator to establish a framework for a natural history study. The team has conducted a survey of over 600 healthcare professionals on current practice, and also surveyed the use of varying terminology, noting how this can delay progress. The results will be published soon.
We took some time to speak with surgeon-scientist Dr Aria Nouri (Geneva, Switzerland) from the Natural History Incubator. Aria explores the relationship between asymptomatic cord compression, mild DCM, moderate DCM and severe DCM, and explains why studying the underlying degenerative processes is crucial if we are to understand when to intervene surgically.
Listen to Podcast Episode: Tackling the Onset of Myelopathy, with Dr Aria Nouri and RECODE-DCM
Learn More about Research Priority 2 on the Myelopathy Matters Podcast
In 2020, AO Spine took over the Myelopathy Matters podcast to tackle the Top 10 Research Priorities for DCM. In this episode, Dr Michelle Starkey and Dr Benjamin Davies examine our understanding of the natural history, development and progression of DCM. With Dr Jefferson Wilson, Dr Brian Kwon and Lady Julia Carter who lives with DCM, they highlight the key knowledge gaps and how to rectify these.