AOSpine Knowledge Forum Spinal Cord Injury is conducting an international, multi-disciplinary consensus process to improve the efficiency of research into degenerative cervical myelopathy (DCM) globally. We are recruiting as many people as possible who are involved in DCM to complete surveys and to disseminate the survey to other organisations, hospitals, and personal contacts for greater impact.
The two-part study—AOSpine Research Objectives and Common Data Elements for Degenerative Cervical Myelopathy (RECODE-DCM)—is being conducted in partnership with the University of Cambridge, UK. In the first part, in collaboration with the James Lind Alliance (JLA) and the National Institute for Health Research (NIHR), we bring together patients, family members, researchers, and healthcare professionals, such as primary care providers, physiotherapists, and surgeons, in a so-called Priority Setting Partnership (PSP). Their task is to identify the top 10 uncertainties or most important research questions in the field.
“This is a great opportunity to get your voice heard in health research and help improve patient care,” says Ellen Sarewitz, DCM Patient Representative from “By carrying out more effective and efficient research, we hope to increase our understanding of DCM and improve the lives of people with DCM.”the UK. She encourages everyone who is affected by or has experience of DCM to participate.
The objective of the second part of the study is to define the actual Core Outcome Set (COS). With the broad range of stakeholders included in the process, the aim is to develop a COS with 10 or fewer outcomes including measurable outcomes such as the level of pain or a measure of grip strength. At least one of the outcomes should be in the core areas of adverse events, life impact, and pathophysiological manifestations.
Comparing apples with apples
Standardised Core Outcome Sets are agreed minimum sets of outcomes or outcome measures, and they allow comparisons to be made between different studies. They are used in clinical efficacy studies of health interventions, to find out how successful treatments are in achieving their aims.
“A COS tells us ‘what’ we should measure and report in trials in a specific area. Otherwise you are always comparing apples with oranges,” Principal Investigator Mark Kotter explains. “The AOSpine RECODE-DCM study will look specifically at DCM care. But first we must find out what is most important to the various stakeholders and the people affected by DCM.”
“It is important to listen to all experts—those living with the condition, and those working to understand or treat it—to produce meaningful recommendations.”Both the PSP and the COS are developed using the established Delphi process, which starts with rounds of online surveys based on systematic reviews, qualitative interviews and patient input. At the end of the process the stakeholders gather for a final consensus meeting to agree on the result.
Patient RepresentativeEllen Sarewitz hopes more efficient research will improve the lives of people with DCM.
Principal InvestigatorMike Kotter says RECODE-DCM aims to shape the way future DCM research is carried out.
Useful links
For more information and to register for the study, visit the study website 
Study support is provided directly through AOSpine's Research department 
AOSpine to define top 10 research priorities and Core Outcome Set for DCM—your chance to be involved
Newsletter 21 | May 2019
Newsletter 21
May 2019
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