The Ontario Neurodegenerative Disease Research Initiative
Condition: Alzheimer Disease; Amyotrophic Lateral Sclerosis; Frontotemporal Dementia; Parkinson Disease; Stroke
MeSH terms: Parkinson Disease; Alzheimer Disease; Motor Neuron Disease; Amyotrophic Lateral Sclerosis; Neurodegenerative Diseases; Frontotemporal Dementia; Aphasia, Primary Progressive; Pick Disease of the Brain
Study type: Observational

Summary: 
      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:

        -  Alzheimer's disease (AD)

        -  Parkinson's disease (PD)

        -  amyotrophic lateral sclerosis (ALS or Lou Gehrig's disease)

        -  frontotemporal lobar degeneration (FTD)

        -  vascular cognitive impairment, resulting from stroke (VCI)
    

Detailed description: 
      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.
    

Intervention name(s): Observational Cohort
Intervention type(s): Other
Observational model: Cohort
Time perspective: Prospective
Sampling method: Non-Probability Sample
Study population: 
        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.
      
Biospecimen description: 
      Blood for genomic analysis of Deoxyribonucleic Acid (DNA) for rare variant genes potentially
      predictive of dementias.