The backdrop for ONDRI studies design
The primary causes of dementia symptoms are neurodegenerative and cerebrovascular (brain blood vessel) diseases that damage the cells and blood vessels in the brain. These diseases are difficult to diagnose, as there are few validated indicators of disease presence and progression, such as a blood test or a scan. In addition, these diseases have symptoms that frequently overlap, making diagnosis even more challenging.
In the past, academic and pharmaceutical research mostly focused on studying one disease at a time. Despite spending millions of dollars and conducting hundreds of studies, few significant breakthroughs on early diagnosis and treatments for neurodegenerative diseases and dementia have emerged.
Setting up the ONDRI framework
ONDRI is founded on the principle that making breakthrough discoveries requires studying multiple targeted diseases at once. With the support of the Ontario Brain Institute, ONDRI researchers study five diseases that can lead to dementia, using the same core assessment protocols. This approach is taken in order to uncover the similarities and differences between these diseases and try to discover improved diagnostic and treatment options.
Foundational study (2013-2018)
frontotemporal lobar degeneration participants
alzheimer's/mild cognitive impairment participants
parkinson's disease participants
cerebrovascular disease participants
ONDRI’s first study included 520 people with lived experience and their 520 care partners. Split into five cohorts/groups, participants reflected five diseases that can lead to dementia symptoms.
Study participants committed to undertaking eight assessments that helped monitor their disease progression and other health and lifestyle factors. These assessments involved a commitment of up to three days per year, over three years (including baseline and two years of follow up).
Recruiting for this study took place in site labs from across the province: from Thunder Bay, to Hamilton, from London to Kingston. Collecting and comparing data from populations across the province added to the richness of the study and resulting data.
The Ontario Neurodegenerative Disease Research Initiative (ONDRI) – Foundational study description
Video: Brief description of ONDRI foundational study by Doug Munoz PhD
To access closed captioning, or read the words, click on CC at bottom of the video
Extensive groundbreaking data
Millions of data points were collected through ONDRI’s foundational study. Rigorous data structure and architecture standards were used to allow for comparison within and across diseases and assessment platforms.
Expert quality control and quality assurance standards were employed throughout the study (before, during and after data collection), which means that conclusions drawn from analysis can be looked at with a high degree of confidence. This same precision has carried forward to today’s studies.
ONDRI phase 2 (2018-2023)
ONDRI’s research is focused on leveraging the high-quality data resulting from its Foundational study, while driving further research activities that achieve impact in:
- Scientific discovery
- Individual function, for people with lived experience of the diseases studied
- The health system
This ongoing research framework is best understood through exploring ONDRI’s four Aims.
Addressing health system impact
Framework for informing policy and system planning
ONDRI, through Aim 4, is designing studies that address the growing impact of neurodegenerative diseases, stroke and dementia, across the healthcare system. Leveraging a close collaboration with ICES, ONDRI’s Aim 4 activities are focused in four areas:
- Health system use and cost of neurodegenerative disease, stroke and dementia
- The burden of other, 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)
ONDRI@Home: evolving with new technologies
Wearables & remote patient monitoring
ONDRI’s current observational studies extend beyond the clinic to monitor participants’ disease progression, activities and other life factors, in their home and community settings. This allows remote observations using the newest sensor technologies. Part of this transition has required evolving the original eight ONDRI assessment platforms.
Remote patient monitoring sensors are able to track, store and share relevant data with all people involved in the care of the study participant, including: the participant, the care partner, the physician, and others chosen by the participant. This allows for an improved level of monitoring that may guide healthcare decisions.
With growing interest in remote patient monitoring technologies, there is a need to increase knowledge of their application and practicality for assessing people living with neurodegenerative disease, stroke and dementia. In addition, methods for delivering feedback must be carefully planned, to ensure data are managed appropriately and privacy is maintained. ONDRI is designing studies that address these challenges.
The ReMiNDD study
The Remote Monitoring in people with NeuroDegenerative Diseases (ReMiNDD) study was designed to examine participant acceptance of remote health and activity monitoring in people 45-90 years old, living with the same diseases studied in the Foundational study.
The initial visit to the clinic involved cognitive, physical, and quality of life assessments. Following this, participants wore sensors for a 7-day period to capture information about movement (activity and walking), sleep, heart function, and speech. Information obtained from this study is being used to design new research studies in the community and to develop methods for delivering feedback to participants and their care partners. Participant experience evaluations were key to adapting the sensors for future studies.
New research coming
There is ongoing opportunity to participate in ONDRI studies
ONDRI investigators are working on new research protocols that incorporate remote patient monitoring technology, ONDRI’s cross-disease & cross-platform design principles, and links to broad health system data. Exciting research innovations to come!