In clinical research, information is recorded to monitor and evaluate care. However, unless there is consistency across research, data can be challenging to interpret or use.
This is the case in Degenerative Cervical Myelopathy (DCM), where information is inconsistent and, according to people living with the disease, has not captured the full effects of DCM.
A solution is to agree on a minimum dataset— that is, a list of information that should be recorded as a minimum, including how it should be reported.
Outcomes and Data Elements
Outcomes are the effects of a disease we are trying to change; they are typically measured at multiple time points. However, studies also record other information, which is important to interpret those outcomes. We refer to these as Other Data Elements. Consistency across both categories is essential to ensure research can be interpreted efficiently. We are developing a list of Core Outcomes and Core Data Elements together we call them Minimum Dataset that need to be measured and reported in DCM research.
The Minimum Dataset will be established based on systematic reviews, qualitative interviews, Delphi process, and a final face-to face consensus meeting. The results will be announced at the Global Spine Congress in 2021 and published here.