Diagnostics, Imaging, and Genetics Network for the Objective Study and Evaluation of Chronic Traumatic Encephalopathy Research Project
Alternate Titles(s): DIAGNOSE CTE
- Description
Diagnostics, Imaging, and Genetics Network for the Objective Study and Evaluation of Chronic Traumatic Encephalopathy (DIAGNOSE CTE) was a longitudinal multi-site study of diagnostic methods for CTE and potential risk factors for the disease. The primary objectives of the study are to collect and analyze neuroimaging and fluid biomarkers for the detection of CTE during life, characterize its clinical presentation, examine disease progression, refine and validate clinical diagnostic criteria, investigate risk factors for CTE, and develop a resource with anonymized data and biological samples for further analysis by the research community.
The study enrolled 240 male participants aged 45 to 74 years old who comprised three cohorts: 120 former National Football League players, 60 former college football players, and 60 healthy controls. Each participant completed a three day baseline visit consisting of a medical history assessment, neurological and cognitive exams, diagnostic imaging exams (i.e., MRI and PET), cerebrospinal fluid (CSF) testing, and questionnaires on mood and behavior. The participants also contributed blood and saliva samples. Follow-up visits began in October 2019 and were interrupted by the COVID-19 pandemic. They resumed in February 2021 as remote follow-up evaluations consisting of telephone-, online-, and videoconference-based cognitive, neuropsychiatric, and neurologic examinations, and in-home blood draws.
- Timeframe
- 2015 - 2023
- Geographic Coverage
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Arizona - PhoenixArizona - ScottsdaleMassachusetts - BostonNevada - Las VegasNew York (State) - New York City
- Local Expert
Access
- Restrictions
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Application RequiredAuthor Approval Required
- Instructions
Data from DIAGNOSE-CTE is available upon request to qualified researchers through the Federal Interagency Traumatic Brain Injury Research (FITBIR) Informatics System. Investigators must complete a Data Access Request form and agree to the terms and conditions, then request a new (or log into an existing) FITBIR account. Once completed, the application will be sent for approval to the Data Access and Quality Committee (DAQ) which oversees access to the FITBIR shared data. When a request is approved, the investigator will receive an email explaining the conditions under which the approval is granted. Data access criteria, the Data Access Request form, and detailed instructions for requesting data can be found here.
Data will also be made available through partnership with the Global Alzheimer’s Association Interactive Network (GAAIN).
- PubMed Search
- View articles which use this dataset
- Other Resources
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ClinicalTrials.gov
NCT02798185