ONDRI’s Research Data

ONDRI’s data meets the highest quality standards

ONDRI adopts the highest standards when it comes to its research study data. The goal is to provide accurate, replicable data that promote data sharing, validation and collaboration among scientists and research groups.

High data quality is at the centre of honouring the commitment of ONDRI’s study participants: people living with the diseases studied, including care partners. 

 

Brain-CODE: Platform for data cross-analysis

Data from ONDRI studies are stored in Brain-CODE. Brain-CODE is the Ontario Brain Institute (OBI’s) state-of-the-art neuroinformatics platform where data collected from their six research programs are stored and analyzed. OBI’s Brain-CODE is a “shared brain” for researchers in Ontario and beyond.

study participants, plus their care partners

Neurodegenerative disease groups

Gigabytes of data - 1st release of baseline data

Participating labs across Ontario

That’s equivalent to 20 feature films!

Data from ONDRI’s Foundational study (2013-18)

The Foundational study involved collecting detailed assessment data for each study participant, over a three year period (starting at baseline). All participants had a minimum of two years of longitudinal data collected.

The same study protocol was followed for participants in each disease group, in order to collect comparable data. This effort yielded millions of data points. 

14 clinic sites recruited participants for ONDRI’s foundational study. Clinicians and research staff worked with study participants to help assess their disease progression, activities and other life factors utilizing standardized tests, questionnaires and other tools. Intensive quality assurance and quality control standards and training were provided for research staff collecting, recording and uploading the study data. For details of assessment data collected for each of the eight assessment platforms:

Your Title Goes Here
Clinical

Demographics; questionnaires relating to function, mood & quality of life, caregiver burden, medical & family history, medications; disease-specific tests.

Eye Tracking

Pro- & anti-saccadic & free-viewing eye movements & pupilography investigated in relation to sensory, motor & cognitive function

Gait & Balance

Gait profile (velocity, stride length) during single & dual tasks, balance & transitions assessments, questionnaires related to fear of falling & activities of daily living.

Genomics

DNA extraction from serum & plasma with analyses of the ONDRI Seq (panel of 81 rare genetic variations) & NeuroX chip assays to determine rare monogenic & polygenic susceptibility in NDD.

Molecular / Neuropathology

Pathology – Optional platform for definitive NDD diagnosis via autopsy of spinal cord & brain tissue samples

Molecular – Blood based biomarkers to verify clinical diagnosis

Neuroimaging

Structural volumes, white matter hypointensity, regional diffusivity using T1, T2, FLAIR, gradient echo, resting state & DTI images.

Neuropsychology

Cognitive profile of attention, memory, language, visuospatial & executive function as well as speech production.

Retinal Thickness

Macular & peripapillary nerve fibre layer thickness measurements across multiple sectors.

Novel process of standardization

 

Each lab in ONDRI’s Foundational study produced data in technology-specific formats (e.g. different branded MRI machine formats). To address this variation and enable effective cross-platform, cross-disease analysis following data collection, ONDRI researchers used specialized standardization tools and techniques. ONDRI datasets have thus been standardized, curated and cleaned using a highly interactive and thorough set of processes. This should provide researchers accessing these data a high level of comfort with regard to data replicability and quality.

Learn more about ONDRI’s data cleaning processes and tools (e.g. pipelines) by scrolling through the full list of publications.

Researchers: for more on software developed by ONDRI data scientists, click here.

Related resources:

Multivariate outlier detection techniques for data quality evaluation in large studies
QA & QC Protocol for Neuropsychological Data Collection & Curation in the ONDRI Study
The Ontario Neurodegenerative Disease Research Initiative (ONDRI)
For Researchers: NIBS Open Source Tools at Github

ONDRI’s place in research on neurodegeneration and dementia

ONDRI’s unique Foundational study has generated one of the best characterized, cross-disease, cross-platform, multi-visit datasets worldwide. Baseline data are being released to the worldwide scientific community first, followed by longitudinal study data. Data from other ONDRI studies are scheduled to be released at a later date.

Sharing ONDRI’s extensive datasets allows researchers and collaborators outside of ONDRI to draw conclusions with confidence in their search for better diagnosis and treatment methods for neurodegenerative diseases, stroke and dementia.

ONDRI is One of OBI’s Six Integrated Discovery Programs

ONDRI is an Integrated Discovery Program within the Ontario Brain Institute (OBI) framework.

Leveraging Ontario’s publicly funded healthcare, world-class brain scientists, clinicians and brain institutions, ONDRI has a unique opportunity to contribute to the global effort to understand brain health disease.