The Data Core
A major contributor to the lack of progress in understanding TBI-associated neurodegenerative disease (TReND) is the recent narrow focus on CTE, which has occurred at the expense of developing a more open minded and inclusive determination of the many other progressive neuropathological changes in all forms of TBI. Moreover, neuropathological and clinical assessments regarding CTE that have been conducted have generally occurred at single sites, with a focus on a single population, and in a manner that renders the data largely inaccessible to the wider research community. By contrast, understanding of wider neurodegenerative disease, such as Alzheimer’s disease and Parkinson’s disease, has benefited from coordinated and dedicated research initiatives that draw from multiple patient populations and link to high quality neuropathological and clinical data. Opportunities to achieve such data linkages and coordinated research initiatives have been facilitated by two recent developments in particular. The NINDS has sponsored efforts that developed sets of Common Data Elements (CDEs) that characterize TBI and are relevant to all ages, injury severity, and phase of recovery. Additionally, the Federal Interagency Traumatic Brain Injury Research (FITBIR) informatics system was developed to share data using common definitions and standards across the entire TBI research field and to facilitate collaboration between laboratories.
The activities of the CONNECT-TBI Data Coordinating Core are designed to capitalize on these opportunities, in response to the pressing need to accelerate our understanding of “TBI-Related Neurodegeneration” (TReND), and in so doing, create a centrally located and shared repository of digital neuropathological data and clinical data to support global studies in TBI, including the research projects proposed under CONNECT-TBI. This will be achieved through harmonization and collation of existing neuropathological and clinical data holdings in TBI across our network of nine leading research centers, and sharing and analyses of these data by CONNECT-TBI investigators and also for investigators in the wider research community. This will be achieved by integrating the activities and site-bridging infrastructure of the Data Coordinating Core with those of the Administrative Core and the Brain Bank Core and the research projects within CONNECT-TBI to deliver the overarching aims of the project. To this end, the specific aims of the CONNECT-TBI Data Coordinating Core are:
- Develop Common Data Elements (CDEs) and Unique Data Elements (UDEs) for digital neuropathological data and clinical data that will be collected in all CONNECT-TBI center projects.
- Establish a multi-center, digital neuropathological data and clinical data reporting network with case accrual from each center project.
- Make the collected neuropathological data and clinical data available by sharing with center site investigators approved by the Administrative Core and by submitting into FITBIR.
- Establish a central TBI data repository by collecting digital neuropathological data and clinical data from TBI cases and normal controls at each center and posting a library of their holdings.
TBI Data Repository and Library
Basic information on the holdings at CONNECT-TBI sites is as follows. The table will be updated as development of the repository continues.
Updated February 24, 2021.
TBI-cases: Patients with a known history of single, moderate, or severe TBI; patients who played contact or combat sport (so exposed to repetitive mild); and any military personnel (military TBI exposure). This will then populate case examples of TBI as single moderate or severe TBI; repetitive mild TBI; military blast TBI.
Neurodegenerative disease (non-TBI): Any patient with a neurodegenerative diases diagnosis, but no history of exposure to TBI defined above.
Controls: Patients with no known history of exposure to TBI (as defined above) or diagnosed neurodegernative disease.