What data collection/entry standards are required on Brain-CODE?
The Ontario Brain Institute (OBI) believes data collection and entry standards are essential to ensuring high-quality data collection. This is important to ensuring data can be compared consistently across datasets, essentially comparing apples with apples.
A number of Common Data Elements (CDEs) were established for Brain-CODE through a Delphi Process whereby researchers from each of the Integrate Discovery Programs (IDPs) were surveyed to determine the CDEs that are most appropriate to collect for their studies and across multiple disorders. The results of those surveys comprise the list of clinical and demographic CDEs. IDP Investigators using Brain-CODE are strongly encouraged to include the relevant Brain-CODE CDEs as part of their Research Ethics Board (REB) submissions and to routinely collect them as part of their studies. OBI is also working on standardizing imaging data in addition to working with leading international organizations on the standardization of genomics data.