The comprehensive assessment of neurodegeneration and dementia (COMPASS-ND) study
COMPASS-ND is the signature observational cohort study of CCNA. Close to 1,200 Canadians between the ages of 50 and 90 who are living with, or are at risk of developing, dementia were enrolled in over 30 sites across Canada. This study is funded by the Government of Canada through the Canadian Institutes of Health Research and 12 partner organizations from the public and private sectors.
COMPASS-ND is a visionary interdisciplinary collaboration established by CCNA to fill critical knowledge gaps. We still know very little about older individuals with complex cognitive decline and dementia who represent the majority seen in Memory Clinics and clinical practice. Individuals with mixed dementia, multi-morbidities, diagnostic complexity, and frailty have been excluded from narrowly focused observational studies like the Alzheimer’s Disease Neuroimaging Initiative (ADNI), other studies worldwide, and clinical trials with strict inclusion and exclusion criteria. Consequently, we know far more about the “perfect” cases of Alzheimer’s disease than about “ecologically-valid” individuals. COMPASS-ND includes real-world participants across the dementia spectrum, and the study is transformative for its participant heterogeneity, data breadth and depth, and unique longitudinal studies planned for the next few years.
Data access
LORIS Database
LORIS (Longitudinal Online Research and Imaging System) is a web-based data and project management software for neuroimaging research studies. Behavioural, clinical, neuroimaging, and genetic data from the COMPASS-ND study are stored and processed in LORIS. As it becomes available, data collected from participants are made accessible via the Data Query Tool, with supporting documentation in both the Data Release and Data Dictionary modules. In addition, CCNA scientists can use LORIS communicate their intentions about how the data will be used, both within and across research teams.
To request a LORIS account, please click here.
Data Access Request
To access data from the COMPASS-ND study, please submit a Data Access Request in LORIS. We kindly request researchers to provide detailed and precise information pertaining to their projects. If you have any inquiries about this process, please get in touch with our Data Coordinator, Turaç Aydoğan (turac.aydogan.ca@gmail.com).
Data release and validation
COMPASS-ND Initial Assessment
The baseline data for our cohort of 1,173 participants are now available in the LORIS Data Query Tool. Please click here for a detailed list of instruments in the COMPASS-ND study.
COMPASS-ND Follow-Up Assessments
The Data Validation team is currently working diligently on verifying data for the follow-up assessments for the cognitively unimpaired and subjective cognitive impairment cohorts. Once these data will be validated, they will be accessible via the LORIS Data Query Tool. For more information about the COMPASS-ND study or data validation, please contact Logane Gnassi (logane.gnassi@ladydavis.ca), our Clinical Research Coordinator.