The backdrop for ONDRI studies design
Dementia symptoms are primarily caused by neurodegenerative and cerebrovascular diseases damaging cells and blood vessels in the brain.
These diseases are difficult to diagnose and have overlapping symptoms; yet academic and pharmaceutical research has largely studied them separately. Few major breakthroughs in early dementia diagnosis and treatment have been made, despite millions of dollars spent and hundreds of studies conducted.
ONDRI researchers are determined to change this reality.
Phase 1 (2013-2018)
The Foundational Study
ONDRI’s first study examined – in great depth and over a 3 year period – participants living with one of 5 diseases.
ONDRI researchers meticulously planned protocols including the same set of assessments carried out on 520 participants in the 5 disease groups. The Foundational Study produced a huge body of multi-disease data with billions of data points. This type of data allows for important discoveries.
Phase 2 (2018-2023)
Today ONDRI is focused on analyzing the Foundational Study data and conducting new studies, to uncover findings that impact:
- Scientific discovery
- Individual function, or the day-to-day lives of people diagnosed with the diseases studied
- The public health system
ONDRI@Home: using wearables & advanced technologies for remote patient monitoring
ONDRI@Home research studies extend beyond the clinic to discover how newer technologies can help assess people with neurodegenerative diseases, stroke and dementia.
In-clinic studies often capture symptoms and observations in a moment in time and rely extensively on participant recall of experiences and symptomology. In contrast, ONDRI@Home studies utilize remote monitoring sensors to track participants in their home and community environments for 7-10 days . This ongoing data capture can reveal trends and events that are not visible in-clinic, allowing researchers to assess study participants’ disease progression, activity and other life factors.
Impact on study participants and other people with lived experience
The data generated through remote assessments is not only meaningful for researchers, it can also be used to improve well-being and healthcare decisions for study participants and others in their care circle.
ONDRI@Home studies are leading the way in providing participants with health and activity reports reflecting information gleaned from sensors worn during their study, all while respecting their privacy.
ONDRI@Home featured in University of Waterloo news
ReMiNDD study (Remote Monitoring in people with NeuroDegenerative Diseases)
The ReMiNDD study examined how people ages 45-90 years old accept remote health and activity monitoring. All study participants were living with one of the 5 diseases studied in ONDRI’s Foundational study.
Participants underwent cognitive, physical, and quality of life assessments followed by 7 days of wearing sensors to capture movement (activity and walking), sleep, heart function, and speech.
This was a fundamental study, aiding in the design of future ONDRI remote monitoring studies. ReMiNDD also helped develop methods for delivering feedback to participants and their care partners. Participant experience evaluations were key to choosing the sensors for future studies.
New research coming: HANDDS-ONT
There is ongoing opportunity to participate in ONDRI studies
ONDRI investigators are working on new research protocols that incorporate ONDRI’s cross-disease & cross-platform design principles and more.
HANDDS-ONT (Healthy Aging in Neurodegenerative Diseases and DementiaS in Ontario) is a new study that will incorporate remote patient monitoring, blood-based genomics and health system analyses.
More to come!
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Big data analysis
Health system impacts: frameworks for informing policy and system planning
ONDRI closely collaborates with ICES to process and analyse health system-wide data pertaining to neurodegenerative diseases, stroke and dementia.
These activities are focused in four areas:
- Health system use and cost of neurodegenerative disease, stroke and dementia
- The burden of co-occurring health conditions amongst people living with neurodegenerative disease, stroke and dementia
- Patterns of drug therapy in people living with neurodegenerative disease, stroke and dementia
- Securely linking existing Ontario health data to varied data sources (e.g. electronic medical records)
Breakdown of these activities are outlined in ONDRI Aim 4.