Diagnostics, Imaging, and Genetics Network for the Objective Study and Evaluation of Chronic Traumatic Encephalopathy Research Project

Alternate Titles(s): DIAGNOSE CTE
UID: 10669
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
Arizona - Phoenix
Arizona - Scottsdale
Massachusetts - Boston
Nevada - Las Vegas
New York (State) - New York City
Local Expert
Subject of Study
Subject Domain
Population Age
Adult (19 years - 64 years)
Senior (65 years - 79 years)
Subject Gender
Male
Subject Sex
Male
Keywords

Access

Restrictions
Application Required
Author 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).

Access via FITBIR

Request study data

Data Type
Study Type
Observational
Data Collection Instruments
Brief Visuospatial Memory Test-Revised (BVMT-R)
Controlled Oral Word Association Test (COWAT)
Epworth Sleepiness Scale
Functional Activities Questionnaire
Montreal Cognitive Assessment (MoCA)
National Health and Nutrition Examination Survey (NHANES)
EuroQOL EQ-5D Questionnaire
Movement Disorder Society-Sponsored Revision of the Unified Parkinson's Disease Rating Scale (MDS-UPDRS)
Timed Up and Go (TUG)
Test of Memory Malingering (TOMM)
Wide Range Achievement Test Fourth Edition (WRAT-4)
Symbol Digit Modalities Test
Trail Making Test Part A
Unified Data Set (UDS) Number Span Test
Behavior Rating Inventory of Executive Function - Adult Version (BRIEF-A) Global Executive Composite
BRIEF-A Metacognition Index
Golden Stroop Color and Word Interference
Cambridge Neuropsychological Test Automated Battery (CANTAB)
Quick Dementia Rating System (QDRS)
Mayo Sleep Questionnaire (MSQ)
Brief Smell Identification Test (B-SIT)
Judgment of Line Orientation (JOLO)
UDS Craft Story
UDS Multilingual Naming Test (MINT)
Headache Impact Test (HIT-6)
Brief Pain Inventory (BPI)
Alcohol Use Disorders Identification Test: Interview Version (AUDIT)
Modified National Institute on Drug Abuse (NIDA) Alcohol, Smoking and Substance Involvement Screening Test (NM-ASSIST) v2.0
PubMed Search
View articles which use this dataset
Other Resources
ClinicalTrials.gov

NCT02798185