The legacy of study participants lives on: ONDRI releases its highly-anticipated Foundational Study data

Why do people participate in research? Especially when it won’t benefit them personally?

For study participants of the Ontario Neurodegenerative Disease Research Initiative (ONDRI), the most common reasons include their desire to take some control over their situation; to give back to the community that has taken care of them; and to find answers to questions that have plagued them throughout their journey.

“To me the ‘why’ does matter! Not everyone wants to know what diseases their loved one had. I did, and that’s because there is so much uncertainty in this field. Participating in ONDRI made it feel like we were doing our little part to change that,” said Maureen, wife of the late Bryon – a father, a husband, a sports fan and an ONDRI Foundational Study participant, who passed away in 2019. On autopsy, Bryon’s diagnosis of frontotemporal dementia (FTD) was confirmed, along with incidence of minor Alzheimer’s and hippocampal sclerosis.

Bryon was originally diagnosed with FTD by Dr. Morris Freedman, Head of the Division of Neurology at Baycrest, in 2013. Shortly after his diagnosis, he was invited to participate in ONDRI’s Foundational Study, to help move the science forward on neurodegeneration and its impact on the brain. During his participation in the study, Bryon continued receiving treatment at Baycrest for his condition, entering into long-term care in 2016.

Although Bryon is gone, his contribution to the study lives on through his data, which will inform the science for years to come.

The context: increasing prevalence of dementia

ONDRI – an Integrated Discovery Program within the Ontario Brain Institute framework – was launched to address the increasing prevalence of neurodegenerative diseases and dementia concurrent with the aging population. The term dementia refers to a set of symptoms, including memory and thinking problems, that affect a person’s day-to-day functions. Dementia is caused by multiple diseases and disorders, which are frequently overlapping. By the time dementia symptoms are present, it is often too late to reverse the devastating effects of these many contributing diseases. One of ONDRI’s key research focuses is to try to uncover easier, earlier modes of diagnosis.

ONDRI’s Foundational Study

ONDRI’s Foundational Study recruited 520 participants and their care partners across five diseases that can lead to symptoms of dementia: Alzheimer’s disease/mild cognitive impairment; frontotemporal dementia (FTD); amyotrophic lateral sclerosis (ALS); Parkinson’s disease and cerebrovascular disease. Participants went through the same rigorous set of well-planned assessment protocols regardless of disease; for example, completing the same series of eye tracking assessments and neuropsychological questionnaires. ONDRI participants invested significant time over three years in order to contribute to ONDRI research, which is reflected in the richness of the resulting data.

Following the exact same assessment protocols across different neurodegenerative diseases is not the norm in care or research.

The benefits of this approach are twofold: allowing data collected to be compared across diseases and within a disease group. This means that researchers studying the data can, for instance:

1. Examine neuropsychology assessment results across all five disease groups, and/or
2. Compare people’s neuroimages to their cognitive symptoms and other assessments, within each disease.

This multi-dimensional study design – which can be visualized through the ONDRI cube above – was devised to promote maximum scientific discovery.

To facilitate the collection of deep, rich, shareable data, significant care and attention was paid to ensuring assessments were standardized across ONDRI’s many sites. Equal care and attention were paid to ensure that data were cleaned and curated – to maximize value for researchers both internal and external to ONDRI. To learn more, take a look and a listen here.

So why do people volunteer for clinical research?

“I remember having conversations with Bryon early on. Telling him that this study may not help him personally, but it would help his family, it would help others in the future. Knowing that made both Bryon and Maureen feel like they had purpose, and that Bryon’s diagnosis could at least lead to some good,” said Brad Pugh, former Research Coordinator with ONDRI’s Foundational Study and current Clinical Operations Manager at Toronto Dementia Research Alliance, working at Baycrest.

ONDRI researchers are proud to be releasing baseline data from the Foundational Study to the scientific community as part of the Ontario Brain Institute’s release of its first clinical data sets – promoting open science and accelerating discoveries in brain health.

Our story highlights an additional reason to the ones mentioned above: even though Bryon is gone, his contribution to the ONDRI study data lives on and could help us diagnose dementia earlier in its progression, allowing clinicians to prescribe interventions to preserve cognitive function sooner.

ONDRI and OBI have released de-identified baseline data from ONDRI’s Foundational Study through a controlled release mechanism. These data can be accessed here.