In clinical research, information is recorded to monitor and evaluate care. However, unless there is a consistency across research, information can be difficult to interpret or use.
This is the case in Degenerative Cervical Myelopathy (DCM), where information is inconsistent. According to people living with the disease, research has not captured the full effects of DCM.
A solution is to agree a minimum dataset—a list of information that should be recorded as a minimum in all research, 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 have developed a list of Core Outcomes and Core Data Elements; together we call them the Minimum Dataset that needs to be measured and reported in DCM research.
The Minimum Dataset was established based on systematic reviews, qualitative interviews, Delphi process, and a final virtual consensus meeting. Respondents also had the opportunity to make additional suggestions.
AO Spine RECODE-DCM has identified the core outcomes and data elements for research in DCM. To ensure these variables are included in research, the next step is to establish a Core Measurement Set (CMS). This means that we must define these variables and identify specific instruments to measure them. It is likely that the initial CMS will include many items, which will require further consolidation. Therefore, it is planned to deliver a distilled version which is more amenable to routine usage. This will be called the "Audit Set".