ONDRI's Legacy Page - DRAFT
The Ontario Neurodegenerative Disease Research Initiative's Legacy
About ONDRI
The Ontario Neurodegenerative Disease Research Initiative (ONDRI) was created to understand the underlying factors of dementia and motor disorders across neurodegenerative diseases to improve the diagnosis, prognosis, care, and outcomes for persons living with dementia and those who support them.
The principal investigators over ONDRI’s two phases were Michael Strong (Phase 1), followed by Douglas Munoz, Mario Masellis and Richard Swartz (Phase 2).
Achievements and Impact
ONDRI made significant impacts in neurodegenerative disease research over its 10-year funding cycle.
Design of cross-disease cross-platform longitudinal studies in dementia
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.
Release of troves of high quality longitudinal data
ONDRI released millions of data points across thousands of unique variables related to neurodegeneration and dementia to the global scientific community.
Contribution to a shared understanding of neurodegenerative diseases
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.
Development of innovative methods for capturing real world health data
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.
Improvements to the understanding of neurodegenerative disease impact in Ontario
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.
Leveraging of research data and lived experience perspectives to assess caregiver burden
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.
Prioritizing lived experience in dementia research
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's Impact Throughout the Years
ONDRI’s achievements made significant impacts in neurodegenerative disease research over the initiative’s 10-year funding cycle, which have been briefly summarized below.
Setting standards for cross-disease, cross-platform dementia studies
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
The complexity of diagnosing early onset dementia
Pandemic messaging developed by the PCAC
Innovative data capturing within new remote dementia studies
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.
Development of an improved understanding of the breadth of neurodegenerative disease impact
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 ….
Addressing caregiver burnout through lived experience perspectives
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.
Resources
- Access foundation study data on Brain-CODE
- Announcement: release of a rich dementia dataset
- View a list of ONDRI publications
- Learn about contributions to standards in brain research
- Technology in research: ReMiNDD and HANDDS-ONT studies
- Highlighting lived experience in ONDRI’s health services research
- Probing the caregiver experience
- Video message from ONDRI's Patient and Community Advisory Committee Chair
- COVID messaging disseminated by PCAC early in the pandemic
- MIGRATE The surprise of volunteering https://ondri.ca/the-big-surpr...
- MIGRATE: Letters my father will never read
- MIGRATE Communication challenges with Aphasia https://ondri.ca/communication...
Acknowlegements
We wish to thank the following groups for their valuable contributions to neurodegenerative disease research
ONDRI's study participants
ONDRI's patient and community advisory committee (PCAC)
ONDRI's leadership
ONDRI's partners
ONDRI’s many partnering organizations including hospital-based study sites, research/academic institutions, health charities, aligned research initiatives, technology companies, and advocacy groups
Detailed thanks
ONDRI’s PCAC included representatives from:
- ALS Canada
- Alzheimer Society Ontario
- Heart & Stroke
- Parkinson Canada
- MINT Memory Clinic
For a complete listing of ONDRI investigators, please refer to the publication list. Platform and disease leads include:
- Robert Bartha
- Malcolm Binns
- Sandra E. Black
- Susan E. Bronskill
- Elizabeth C. Finger
- Morris Freedman
- Barry Greenberg
- Wendy V. Hatch
- Robert A. Hegele
- Christopher Hudson
- Donna Kwan
- Anthony E. Lang
- Paula M. McLaughlin
- Connie Marras
- W.E. Bill McIlroy
- Manuel Montero-Odasso
- Douglas P. Munoz
- David Munoz
- Michael J. Strong
- Stephen C. Strother
- Richard H. Swartz
- Sean Symons
- Brian Tan
- M. Carmela Tartaglia
- Lorne H. Zinman
ONDRI Executive Committee members:
2013-18
- Sandra E. Black
- Dale Corbett
- Barry S. Greenberg
- David A. Grimes
- Robert A. Hegele
- Anthony E. Lang
- Michael J. Strong
- Richard H. Swartz
2018-23
- Malcolm Binns
- Sandra E. Black
- Susan E. Bronskill
- Jill Czuczman
- Lisa Droppo
- Robert A. Hegele
- Anthony E. Lang
- Mario Masellis
- W.E. Bill McIlroy
- Paula M. McLaughlin
- Douglas P. Munoz
- Angela C. Roberts
- Christina Stergiou-Dayment
- Stephen C. Strother
- Richard H. Swartz
ONDRI’s partnering organizations:
- ALS Canada
- Alzheimer Society Ontario
- Alzheimer Society Canada
- Baycrest Hospital
- Brain Eye AMyloid (BEAM) Study
- Canadian Biomarker Integration Network in Depression (CAN-BIND)
- Canadian Consortium on Neurodegeneration in Aging (CCNA)
- Centre for Addiction and Mental Health (CAMH)
- Centre for Advancement in Brain Health (CABHI)
- Children's Hospital of Eastern Ontario (CHEO)
- Elizabeth Bruyere Hospital
- Hamilton Health Sciences Centre
- Hospital for Sick Children - The Centre for Applied Genomics
- Heart & Stroke
- IC/ES
- Kensington Eye Institute
- Lawson Health Research Institute
- McMaster University
- MINT Memory Clinics
- Parkinson Canada
- Parkwood Institute / St. Joseph's Health Care
- Providence Health Care
- Provincial Geriatrics Leadership Office (PGLO)
- Queen's University
- Robarts Research Institute
- Rotman Research Institute
- Sibel Health
- St. Michael's Hospital / Unity Health
- Sunnybrook Health Sciences Centre
- Sunnybrook Research Institute
- Tanz Centre for Neurodegenerative Diseases
- The Ottawa Civic Hospital
- Thunder Bay Regional Research Institute
- Toronto Dementia Research Alliance
- Toronto Western Hospital / University Health Network (UHN)
- University of Gothenberg (Sweden)
- University of Ottawa
- University of Toronto
- University of Waterloo
- University of Western Ontario