An observational study in Alzheimer Disease, Amyotrophic Lateral Sclerosis and Frontotemporal Dementia, sponsored by Ontario Neurodegeneration Disease Research Initiative. Completed at 12 sites in Canada. Open to participants aged 55 Years to 85 Years. Per ClinicalTrials.gov, last updated 2024-04-02.
Sponsored by Ontario Neurodegeneration Disease Research Initiative · Observational
The Ontario Neurodegenerative Disease Research Initiative (ONDRI) is a province-wide collaboration studying dementia and how to improve the diagnosis and treatment of neurodegenerative diseases including:
The Ontario Neurodegenerative Disease Research Initiative (ONDRI) is a research program designed to investigate similarities and differences of dementia among five diseases that will improve the diagnosis and treatment of neurodegeneration. The focus is on diseases that are associated with dementia: Alzheimer's disease/mild cognitive impairment, Parkinson's disease, amyotrophic lateral sclerosis (ALS or Lou Gehrig's disease), frontotemporal lobar degeneration, and vascular cognitive impairment (resulting from stroke).
ONDRI is a province-wide collaboration between more than 50 of Ontario's world-class neurodegenerative disease researchers and clinicians, four patient advocacy groups, the industrial sector, and more than 20 clinical, academic and research centres carried out in partnership with the Ontario Brain Institute (OBI).
Instead of only studying what's unique, our long-term observational study is seeking out the common early indicators and risk factors of the five diseases.
Our mandate is to ensure that the findings from the data collected are transformed into new diagnostic methods that will help detect diseases earlier, improved clinical practice that puts patients first, and eventually new effective treatments that will slow the diseases from progressing or even prevent the disease so people can continue to enjoy the later years of their lives.
More than 600 participants will be followed for up to three years and will complete assessments for genomics, gait and balance, eye measurements, neuropsychology, and neuroimaging and will donate their data to a comprehensive integrated data management system called Brain-CODE.
4,487 studies on the registry are indexed under Parkinson Disease; 1,082 are open to participants now.
This study's enrollment of 522 is above the median of 96 across 1,057 observational studies indexed under Parkinson Disease.
Browse Parkinson Disease studies →Ontario Neurodegeneration Disease Research Initiative is the lead sponsor of 2 studies on the registry; none are open to participants now.
Counted across the registry records on this site, refreshed daily.
Approximately six hundred (600) participants who have one of the following diseases: VCI (150), AD/MCI (150); PD (150); FTD (60) and ALS (90) are to be enrolled.
Participant with a minimum MoCA score of ≥18.
Participant must have a reliable Study Partner. The Study Partner must:
Exclusion Criteria:
Presence of any of the following clinical conditions:
Eye Tracking - Pro Saccade and Anti Saccade
Pro-saccade task assesses simple sensory-motor function by following eye movement for specific tasks. • Anti-saccade task is identical to the pro-saccade task, except the instruction, indicated by fixation point (FP) colour,and is a sensitive indicator of cognitive disturbances.
Time frame: 5 Years
Retinal Nerve Imaging
Institutions with the Heidelberg Spectralis with Ocular Coherence Tomography (OCT) Blue Peak Instrumentation will participate in this assessment. Both eyes of all participants will undergo: * Assessment of best corrected visual acuity * Digital colour fundus photography. * Retinal nerve imaging
Time frame: 5 years
Gait and Balance
All participants will perform walks along a 6 metre path while wearing hip and ankle accelerometers. Participants will perform three main tasks: 1) preferred walking speed, 2) dual task walking and 3) fast walking.
Time frame: 5 years
Genomics
Blood samples will be drawn by LifeLabs Medical Laboratory Services located in London, Ottawa, Toronto, Kingston, Thunder Bay, and Hamilton. Under extenuating circumstances, an appointment may be made with LifeLabs to have the blood samples drawn at home or in a residential facility.Samples must be drawn from Monday to Wednesday to allow for weekday shipping and receipt of samples at the OBI Biobank Sample Reception at Robarts Research Institute in London, Ontario (ON). LifeLabs standardized protocols for collection and overnight shipping will be followed. Subsequently, DNA aliquots for NeuroX microarray will be sent to Dr. Ekaterina Rogaeva at the University of Toronto in Toronto, ON. DNA aliquots for the OBI Neurodegeneration Re-sequencing Panel will remain with Dr. Robert Hegele at Robarts Research Institute in London, ON.
Time frame: 5 years
Neuropsychology
A battery of broad-based, standardized and validated cognitive assessments covering attention,memory, speech production, language and visuospatial function with a focus on coginitve domains reflection frontal network functioning and social attention. will be completed on an annual basis.
Time frame: 5 years
Neuroimaging
Imaging will be done on an annual basis to characterize the neuro-anatomical, microstructural, and functional profiles of dementia types and monitor changes from baseline.
Time frame: 5 years
Plan to share: Yes — All IPD collected for the purpose of publications are to be shared via a controlled public release along with the accompanying data dictionaries and other supplementary files. All data shared are de-identified in accordance with the policies set out by the Ontario Brain Institute (OBI).
No publications or documents are linked to this record.
This study is completed, as verified in Apr 2024. You cannot join it, but the record below documents what was studied.
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Ontario Neurodegeneration Disease Research Initiative