We conduct the eight assessments as part of the Ontario Neurodegenerative Disease Research Initiative (ONDRI): Gait and balance, genomics, neuroimaging, neuropsychology, ocular – eye tracking, ocular – retinal nerve fibre layer thickness, neuroinformatics, and neuropathology.
Gait and balance
Participants answer questions about aid use and balance confidence, stand still with their arms crossed for 30 second increments, move from the sit to stand position, and walk along a six meter path while wearing small hip and ankle measurement devices. The devices are connected wirelessly to a computer, which uses the signals to assess balance and walking qualities
- Approximate length of assessment: 40 minutes
- The assessment of balance and walking is an important index of central nervous system health and specifically of the progression of neurodegenerative diseases
- Earlier detection and a better understanding of specific deficits can lead to targeted proactive interventions to keep people as mobile as possible. This includes personalized gait and balance training, use of walking aids, etc. that will increase safe mobility and reduce the risk of falls
Video: Watch to learn more about the gait and balance assessment.
- Participants visit a Life Labs Medical Laboratory Services location and have a blood sample taken. The sample undergoes a genomics assessment that consists of sequencing to define the presence of mutations in genes causing familial forms of neurodegenerative diseases and evaluation of the common genetic susceptibility in participants
- This assessment compares all participants genetically
- This is the first time an initiative has been able to test for rare and complex genetic susceptibility across the full range of participants with neurodegenerative diseases
Video: Watch to learn more about the genomics assessment.
- Participants brains are imaged with an MRI (magnetic resonance imaging) scanner and, for a few participants, PET (positron emission tomography) scanner
- MRI uses a combination of magnetic fields and radio waves to build three-dimensional pictures of key regions in the brain. PET also creates three-dimensional images, but creates them by detecting a mildly radioactive tracer as it flows through the blood vessels of the brain. Some of the MRI and PET images will be detailed “stills” while others will be like movies that show brain activity over time
- Approximate length of assessment: One hour
- As neurodegenerative diseases progress, the structure of areas in the brain regions change. Researchers use imaging data from all participants to look for patterns in how those changes happen, and if brain structure can be used as a predictor for these diseases
Video: Watch to learn more about the neuroimaging assessment.
- Participants complete a series of paper-and-pencil based tasks, as well as computer based measures that look at a variety of cognitive skills, including attention, memory, thinking speed, visuospatial processing, speech and language, executive functioning, and social cognition
- Approximate length of assessment: Three hours
- Memory loss, inability to focus, and problems with mood and apathy are symptoms of most neurodegenerative diseases. These assessments enable researchers to measure the severity of those symptoms and compared across disease groups
- The aim is to extract patterns that may help with diagnosing problems earlier
Video: Watch to learn more about the neuropsychology assessment.
Ocular – Eye tracking
- Participants stare into a light-based device at a computer screen and eye tracking technology measures eye movements while performing tasks
- Approximate length of assessment: 45 minutes
- Patterns of rapid eye movement have long been known to provide measures of certain thinking processes, and can provide early signs of thought impairment
Video: Watch to learn more about the eye tracking assessment.
Ocular – Retinal nerve fibre layer thickness
- During the non-invasive assessment, participants stare into two light-based devices to obtain two important measures: the accumulation of a substance called beta-amyloid in lenses and the thickness and structure of retinas
- Approximate length of assessment: 30 minutes
- The development of a sensitive, predictive and relatively easy to implement biomarker, may be offered with Spectral Domain Optical Coherence Tomography (SD-OCT – a non-contact medical imaging technology), and would have huge implications for the development of management of neurodegenerative diseases
- If the natural history of neurodegenerative disease can be objectively documented using SD-OCT from very early stages of onset, then this would permit the assessment of alterations in Retinal Nerve Fibre Layer Thickness thinning as a predictor for risk, and as an index of the effect of progression related to treatment
- Beta-amyloid levels in lenses may provide hints that the same substance is beginning to build up in the brain – a condition related to neurodegenerative diseases. The retina’s thickness and structure in certain key areas can be a useful early indicator of a neurodegenerative condition, as well as blood flow problems in the brain
Video: Watch to learn more about the retinal nerve fibre layer thickness assessment.
- The data from all assessments is imputed into the Brain-CODE (a centrally funded and Ontario Brain Institute managed resource) database
- Common Data Elements (CDEs) within Brain-CODE are used in order to optimize the ability of investigators to search and analyze pooled data
- Brain-CODE enables the fast development of ONDRI data modules to facilitate entry, quality control, aggregation, linkage, searching, and sharing of resulting data sets
Video: Watch to learn more about the neuroinformatics assessment.
- Upon passing and following consent by next-of-kin, deceased participants are transported to one of four hospitals where a standard autopsy is performed
- The brain is also removed for further study