The AO Spine RECODE-DCM study group has taken important steps in its aim to build a research toolkit for degenerative cervical myelopathy (DCM): they have defined a Core Minimum Dataset—the required minimum to be measured and reported in all future DCM research—and agreed on an index term and its definition. The findings will be launched during the AO Davos Courses 2020 in a webinar entitled "Degenerative Cervical Myelopathy, Current Perspectives and Future Directions for Clinical Practice and Research".
Principal Investigator Mark Kotter stresses this is imperative to make studies comparable. “The core dataset is really the core information that needs to be collected to make clinical research robust, relevant, and reliable. These are the three important Rs to remember.”
"The core dataset makes clinical research robust, relevant, and reliable."
The six-hour online consensus meeting was part of the AO Spine REsearch Objectives and COmmon Data Elements for Degenerative Cervical Myelopathy (RECODE-DCM) study, hosted by the AO Spine Knowledge Forum (KF) Spinal Cord Injury.
The international, multi-stakeholder meeting brought together surgeons, allied healthcare professionals, and people with lived experience of Degenerative Cervical Myelopathy, which has now been agreed as the index term. With a clear definition, creating recognized disease codes such as the International Classification of Disease (ICD) or literature database codes like the Medical Subject Heading (MeSH) will be possible.
Prior to the consensus workshop, Co-Principal Investigator Benjamin Davies and colleagues carried out a systematic literature review to generate a list of potential measures to characterize DCM patients' outcome. The outcomes were iterated in a Delphi process and grouped under six domains: adverse events, economic impact, life impact, neuromuscular function, pain, and radiology.
"The effects were grouped under six domains: adverse events, economic impact, life impact, neuromuscular function, pain, and radiology."
A core outcome set must also not burden researchers by requiring them to measure too many different outcomes. “Our mantra in this meeting was 'Core means core',” Davies repeats. Each outcome was categorized according to importance: core, important but not core, or definitely not core. Through discussion an outcome was moved under the respective title, thereby arriving at the final COS.
The newly established Core Minimum Dataset, in combination with the top ten priorities, and a definition for the index term, can accelerate research findings and improve outcomes that matter most to all stakeholders. But first, the DCM community must come together to translate these findings into the clinic.
To speed up the knowledge translation and implementation of the findings, AO Spine RECODE-DCM is engaging selected leaders and experts as ambassadors to champion the research priorities. The ambassadors will raise awareness and understanding of DCM among clinicians, other health professionals, and the public, promote commitment from leading authorities worldwide, and focus research on specific research priorities.
“This process has a great potential to raise awareness,” Michael Fehlings says. "But of course, the process is much richer than that. I believe we will emerge from this not only with the core data set, but also with a renewed vigor to pursue translational research to help people.”
Davies joins him in celebrating the achievement calling it “one small step for man, one giant leap for myelopathy!” The passionate involvement of stakeholders has been exceptionally impactful and resulted in articles, features, videos, and podcasts including lived experiences. One of the drivers, a person with myelopathy, is Iwan Sadler. "The most important outcome from the project is knowing that people diagnosed with myelopathy in the future will not have to endure the same journey seeking diagnosis."
"We are at a point where we can really transform the care and the outcomes for people with DCM.”
Fehlings agrees it is important to keep hearing all perspectives when agreeing next steps. “Our research is about trying to improve the quality of life for people with DCM. We've come a long way, but I think, we are now at an inflexion point where we can really transform the care and the outcomes for people with DCM.”
To be a part of this global research initiate, to become an Ambassador and make a difference to research and to people living with DCM, please click here.
Register for the Core Outcome Set launch webinar here
Find out more about AO Spine RECODE-DCM study here.
Read more AO Spine Knowledge Forum SCI and their studies here.
