We are looking for: patients with Degenerative Cervical Myelopathy, their supporters or carers, doctors and surgeons who treat patients with DCM, researchers in the field of DCM and allied health professionals (nurses, physiotherapists, etc.) who look after patients with DCM.
Why is this study being carried out?
RECODE-DCM (REsearch Objectives and COmmon Data Elements for Degenerative Cervical Myelopathy) aims to shape the way future DCM research is carried out, by developing a number of recommendations to improve research efficiency. By carrying out more effective and efficient research, we hope to increase our understanding of DCM and improve the lives of people with DCM.
Our aims are to:
1. Establish a standardised definition for DCM.
2. Create a list of unanswered DCM research questions, ranked according to priority.
3. Create a standardised set of baseline characteristics and outcomes we should be measuring in DCM research.
An outcome is a consequence of a medical condition that directly affects the length or quality of a patient’s life (e.g. pain). A baseline characteristic is something about an individual and/or their DCM journey which affects outcomes (e.g. age, DCM severity). This process is being led by the AOSpine Knowledge Forum Spinal Cord Injury, primarily through researchers at the University of Cambridge, but involves people from around the world.
How are recommendations developed?
In order to produce recommendations that are correct and meaningful, it is important to listen to all the different ‘experts’ involved: those living with the condition, and those working to understand or treat it. We call this a consensus process. It starts by gathering lots of general information, and using feedback from everyone involved, then boiling this down to what is considered essential. You have been approached as an expert we should listen to, and we would be grateful for your opinions. Please see our study video below which gives an overview of the process. Please also review the information sheets below before registering for the study.
This consists of 2 stages, an online Delphi survey and a face-to-face consensus meeting.
A Delphi survey is a technique where a group of experts are asked a series of questions, in this case what they believe are the most important research questions or baseline characteristics and outcomes. After each survey round we will refine and organise these opinions into categories. The collective results will then be sent back to you in the next survey round, where you will be asked to rank what you think are the most important. We anticipate 2-3 survey rounds, lasting 10-20 minutes each.
The results of the Delphi surveys will then be discussed at a face-to-face meeting to produce a standardised DCM definition and final shortlist of the most important research questions, baseline characteristics and outcomes.
RECODE-DCM - Study Video
Please see the description above and the study information sheets. We anticipate 2-3 survey rounds, each taking 10-20 minutes to complete.
A meeting to produce a standardised DCM definition and final shortlist of the most important research questions. Please see the study information sheets for more details.