You have been randomised to participate in the Core Outcome Set and Core Data Elements stream, a process to define the core outcomes and measurements to be included in future DCM research.
What is a Core Outcomes Set (COS)?
A COS is a collaboration between people with a medical condition, their careers, health care professionals and researchers that aims to determine what outcomes should be assessed as a minimum in DCM research. This aims to address the common problem, whereby different researchers measure different outcomes, preventing pooled analysis.
What Happens During Participation?
This process starts by defining what should be measured. This is not the same as how something should be measured, which is a later stage, once what should be measured is finalised. This process starts with an online Delphi survey and a face-to-face consensus meeting.
Below you will find the opening round of the Delphi survey, which will take about 10-20 minutes to complete. The list of outcomes and data elements so far is based upon what is currently measured in DCM research. You will be asked to rate the importance of measuring these outcomes on a scale of 0 (not important at all) to 9 (extremely important). You will also have the opportunity to add in outcomes or data elements you think are missing. The outcomes and data elements have been grouped for convenience.
After Round 1 closes, these findings will then be processed, before we invite you to participate a second time. In Round 2 you will be presented with the results of Round 1 (the overall results, the results per group of experts, and your previous rating). This will give you the opportunity to change your rating if you so wish, but also to rate newly suggested outcomes. For the CDE we will also provide a summary of the evidence base for the significance of any data point, if available. After Round 2 the results will be processed and reviewed. Any outcomes that have not achieved consensus will be discussed at the face-to-face consensus meeting.
It is very important that you complete all rounds of the survey. Without full completion we are unable to include your valuable contribution in our study. This risks some key groups being underrepresented, which may influence our findings. However, please be aware that you are free to withdraw from the study at any point.