ONDRI's Legacy Page - DRAFT

ONDRI was the first neurodegenerative disease study worldwide to devise a common protocol utilizing multiple assessment platforms across neurodegenerative diseases, with data collected over many years. ONDRI’s methods were designed for maximum impact and were adopted by other studies domestically and internationally.

ONDRI released millions of data points across thousands of unique variables related to neurodegeneration and dementia to the global scientific community.

ONDRI’s protocols presented a unique opportunity to study five disease cohorts across multiple platforms, at different points in time; this allows for observations between and within platforms and diseases, as diseases progressed. ONDRI’s publications contributed to a deeper understanding of the processes through which neurodegenerative diseases can contribute to cognitive and motor decline.

ONDRI researchers designed remote, technology-driven study protocols conducted outside of the lab and clinic. These studies employed digital health measurement tools to assess daily health-related behaviors, cognitive health, and wellness within individuals’ homes and communities. Researchers also developed rigorous, open access data processing pipelines to advance the clinical utility of remotely acquired data, as well as personalized reports for study participants that served to empower self-management of health-related behaviors.

Through collaboration with IC/ES, ONDRI researchers published important papers on the co-occurrence and sequencing of neurodegenerative disease and other brain conditions, the impact of the COVID-19 pandemic on people living with neurodegenerative diseases in Ontario, and variations in access to and use of health care services for people living with neurodegenerative disease.

ONDRI’s Foundational Study recruited care partners, along with people living with neurodegenerative disease. These care partners answered a series of questions, common across disease cohorts, related to the impact of caregiving on their health and wellbeing.

ONDRI’s Patient and Community Advisory Committee (PCAC) played an essential role in each phase of ONDRI’s research, from informing research questions, to helping recruit individuals for studies, to disseminating learnings through events and storytelling. Through these endeavours, ONDRI’s PCAC significantly contributed to the body of knowledge on the lived experience of neurodegenerative diseases and dementia.

ONDRI was the first neurodegenerative disease study worldwide to devise and adopt a common protocol incorporating multiple platforms across different neurodegenerative diseases and time periods. ONDRI’s methods were designed for maximum impact and were adopted by many studies domestically and internationally. ONDRI researchers, through early access to study data, published papers many important papers that contribute to a deeper understanding of the processes through which neurodegenerative diseases can contribute to cognitive and motor decline

ONDRI researchers designed remote study protocols employing fit for purpose wearables, cognitive health, wellness and mood questionnaires, specially designed pipelines (algorithms) and other platform tools adapted for remote use.

Through collaboration with ICES, ONDRI researchers published important papers on the co-occurrence and sequencing of neurodegenerative disease and other brain conditions, the impact of the COVID-19 pandemic on people living with neurodegenerative diseases in Ontario, and ….

ONDRI’s Foundational Study recruited care partners, along with people living with neurodegenerative disease. These care partners followed protocols, common across disease cohorts, related to the impact of caregiving on their health and well-being.