Contribution to dementia research recognized in new publication in renowned journal

A methods paper describing a study conducted by the Ontario Neurodegenerative Disease Research Initiative (ONDRI), an OBI Integrated Discovery Program, has been published in a prolific international academic journal, Alzheimer's & Dementia: The Journal of the Alzheimer's Association. The paper outlines ONDRI’s distinctive design methods, and summarizes important characteristics of the foundational cohort at baseline.

ONDRI recently shared de-identified participant data collected from its Foundational Study (2014-2018), which were stored and analyzed through Ontario Brain Institute’s (OBI) Brain-CODE neuroinformatics platform. This pivotal study depended on participation by 520 people living with one of five diseases: Alzheimer’s Disease/Mild Cognitive Impairment, Parkinson’s Disease, Amyotrophic Lateral Sclerosis, Frontotemporal Dementia, and Cerebrovascular Disease, along with their care partners. These diseases can cause dementia symptoms through a combination of neurodegeneration (loss of function and eventual death of brain cells), along with dysfunction of blood vessels in the brain.

Alzheimer’s & Dementia has published a paper authored by Kelly M. Sunderland et al that outlines the ground-breaking methodology ONDRI used in the clinical study, which is the first of its kind to study these five diseases associated with dementia, while using the exact same protocols, at the exact same times, across multiple different platforms.

All study participants living with these neurodegenerative diseases received the same comprehensive assessments (in many cases, assessments they otherwise would not have received depending on their diagnosis) which allows for cross-referencing across diseases, and across assessments, making room for new research questions to be asked and explored, and for the differences and similarities of these diseases to be investigated, all of which is not possible with typical single-disease, single-platform dementia study designs.

Ground-breaking design. Profound results.

This work is reflective of the unique mandate for ONDRI as a highly collaborative research program – tackling the complexity of dementia which has many, frequently overlapping, causes by studying multiple associated diseases simultaneously.

Dementia itself is a syndrome, not a disease, that is defined by symptoms around memory and executive planning amongst others. Late-onset dementia, i.e., after the age of 65, is most often caused by multiple diseases that result in neurodegeneration (when brain cells start to falter and eventually stop working all together) and issues to do with the brain’s blood vessels.

These diseases each can cause multiple dementia symptoms that can often intersect and are difficult to understand independently. This makes it a challenge to definitively predict what the underlying causative pathologies are outside of an end-of-life autopsy, as there is currently no ability to biopsy brain tissue in life.

To date, the majority of clinical studies on dementia focus on one disease at a time, and hone in on neuropsychology, and/or one or two other assessment “platforms” that are known to track the signs and symptoms associated with dementia and neurodegeneration. ONDRI’s study incorporated diverse platforms - including clinical, neuropsychological, ocular, genomic, gait and balance assessment as well brain and retinal imaging – to support significant new insights.

A new approach to studying dementia. Now available for others to emulate.

The Alzheimer’s and Dementia paper provides an overview of the design methods and the distinct cohort studied in this multi-site, longitudinal, observational study. The findings will not only help to characterize the cohort, which will support dementia researchers looking to leverage their data to identify markers of disease causation, progression, severity, and potential targets for therapy but also serve as a template for other researchers seeking to design similar in-depth studies of dementia.

We also must underscore the impact for participants in these research studies – there is, without question, an investment of their time and energy. Allowing for more open and accessible data sharing among researchers is critical in order to maximize the contribution of these participants.

The data from this study can be found on Brain-CODE, where they were thoroughly standardized, cleaned and curated while also being accompanied by data dictionaries which help to explain how to interpret the information.

Learn more about the dataset from ONDRI's Foundational Study.