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 outcome set (COS)?
We would like to welcome you to our COS workflow. 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.
What is the problem we are addressing?
At the moment, different studies often measure different outcomes. For instance, imagine two studies on how to treat DCM.
- Study A - researchers measure grip strength as an outcome
- Study B - researchers measure symptoms of pain as an outcome
When the two studies are finished, we cannot compare or combine their results because they have used different outcomes. We would not be comparing like with like. This creates inefficiency in research.
If all studies on a particular health condition used the same outcomes, they could all be compared and combined. This would reduce waste by making the best use of all the research. When a set of main outcomes has been agreed for a health condition, it is called a core outcome set.
What Happens During Participation?
A COS 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. The COS consists of an online Delphi survey and a face-to-face consensus meeting.
Below you will find the opening round of the Delphi survey, with each survey taking between 10-20 minutes. A Delphi is a technique where you (a group of DCM experts) are asked a series of questions about what you believe the most important DCM outcomes are. The list of outcomes so far is based upon what is currently measured in DCM research and a series of interviews conducted with people with DCM. 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 you think are missing. These outcomes have been grouped into categories.
After Round 1 closes, the findings will 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 ratings). This will give you the opportunity to change your rating if you so wish, but also to rate newly suggested outcomes. 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.