Study Participants

At the centre of ONDRI research

Study participants play an essential and central role in health-related research. People join studies for different reasons: a personal connection to a disease, a desire to improve clinical outcomes for future generations, a need to access additional resources which may not otherwise be available, and others. At ONDRI, the commitment and contribution of study participants is greatly appreciated.

To ONDRI’s study participants: thank you.

A deep thank you to ONDRI’s study participants — people with lived experience, including care partners — for contributing to ONDRI’s mission. Throughout this website, there are many examples of the impact, commitment and dedication of study participants to advance research into the diseases studied.

ONDRI research includes care partnerships

People with lived experience

ONDRI research studies are made possible by the effort and contribution of people who are living with the disease(s) being researched. 

For ONDRI’s foundational study, participants traveled to affiliated clinics to complete targeted assessments. Participants invested several hours, over the course of up to three days, to complete their baseline assessments; this was followed by a similar investment of time in annual visits, over the next two, and in some cases, three years. 

For ONDRI’s ReMiNDD study, participants wore health and activity monitors for a period of a week, as they went about their daily lives and activities, while researchers collected data.

Video: Brad Pugh, PMP, formerly of ONDRI, pays tribute to study participants

To access closed captioning, or read the words, click on CC at bottom of the video

Care partners

Care partners are also people with lived experience.* Their involvement and support is often critical for improving the quality of life for people living with dementia.

When it comes to brain research, care partners can provide important observations and different perspectives into the life of a person living with neurodegenerative disease, which may not be accessible or observable directly. Care partners can play an important role whether directly participating in a study or helping behind the scenes.

Focusing on care partners themselves is also critical to research, as this role can be physically, emotionally and financially demanding. Targeted research can help both individual study partners and the health system in general, to hone in on health and social services that are needed to support both the care partner and the people they care for.

Privacy in research studies

 

Some people may worry that health research can be invasive. It is important to remember that privacy and confidentiality are always protected in research studies, and that ONDRI’s participants’ privacy and interests are at the forefront of the research.

Related resources:

ONDRI Research on care partners
Derek Beaton, PhD., presenting care partner research paper at ONDRI meeting