Ontario Neurodegenerative Disease Research Initiative (ONDRI)

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).

ONDRI's Legacy: Achievements and Impact

Phase 1: The Foundational Study (2013-18)

ONDRI’s foundational study focused on building a deeply characterized cross-disease cross-platform database, to inform an improved understanding of neurodegeneration and its impacts on people living with these diseases and their care partners. Data from this study are currently being utilized by researchers around the world to uncover related discoveries.

Phase 2: Maximizing Impact and Moving ONDRI into Homes and Communities (2018-23)

In the second phase, ONDRI researchers completed the foundational study and established new initiatives focused on:

  • Publishing scientific papers based on Foundational Study data
  • Shifting the research to the home and community utilizing wearables and other technologies to monitor people as they engage in their daily lives
  • Expanding scientific collaboration and knowledge translation to increase impact
  • Examining neurodegenerative disease at the population level by conducting research using provincially collected health services data

See a list of ONDRI publications, up to May 31, 2023.

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.

    Contributions to standards in research

  • Release 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.

    Data release announcement

  • 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.

    Access the foundational study dataset

  • 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.

    HANDDS-ONT Study

  • 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.

    Lived experience: a key to success

  • 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.

    Probing caregiver burden

  • 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.

    Hear more from the PCAC

Additional Resources

  • Lived experience of care partners

    Infographic

  • The complexity of diagnosing early onset dementia

    Blog

  • Pandemic messaging developed by the PCAC

    Infographic

  • Communication challenges with aphasia

    Blog

  • Perspectives on research and datasharing

    Podcast

  • Letters my father will never read

    Blog

Publications marquantes (en anglais)

Acknowledgements

Thank you to following groups, without whom ONDRI's research into neurodegenerative diseases and dementia would not have been possible.

  • ONDRI’s study participants, whose dedication and commitment were instrumental to ONDRI’s scientific successes

  • ONDRI’s patient and community advisory committee (PCAC) members, who informed and guided ONDRI’s research

  • ONDRI’s researchers and clinicians, whose dedication and commitment led to important scientific discoveries that will help shape patient care

  • ONDRI’s leadership, including the Executive Committee members, who helped drive every aspect of the research

  • ONDRI’s partners including hospital-based study sites, research & academic institutions, health charities, 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 were:

  • 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