What is the study about?
The Health in Aging, Neurodegenerative Diseases and DementiaS in ONTario (HANDDS-ONT) Study is an observational study that takes place in the comfort of the participant’s home, with no study visits occurring in a clinic. The study is recruiting people living with and without a neurodegenerative disease (see eligibility criteria) or the effects of stroke. Studying both groups will help ONDRI researchers to:
- understand how the diseases affect different people
- discover ways to potentially detect diseases earlier
- explore ways to help people manage their daily health related behaviours
Participant data is collected virtually through wearables – small sensors worn on the wrist, ankle and chest — for 7-10 days, as participants go about their daily activities. Data is also collected from assessment questionnaires regarding cognitive health, mood, and quality of life. Blood samples are collected to understand how one’s genetic makeup could provide for earlier detection of some conditions, and for analysis of certain risk factors.
Combining the information from the sensors (walking patterns, sleep, heart rate/rhythm, etc.), the questionnaires and the blood samples will allow researchers to understand participants’ day to day challenges in aging while living with or without a neurodegenerative condition.
Participants receive a personalized health and activity report, describing sleep and activity during the time the wearable sensors are worn. This information may help participants better understand and manage some aspects of their overall health and it can be shared with their circle of care.
The study team is seeking participant evaluation of the personalized report. This feedback is highly valued and will be considered for future study report designs. All data collected will be anonymized and will be stored securely by the Ontario Brain Institute.
The researchers believe that this study will make a difference in the lives of those living with these conditions, while contributing to the science of neurodegenerative disease, stroke, and dementia research.
Eligibility–Who can participate?
To participate in HANDDS-ONT you must be:
- At least 18 years of age
- A resident of Ontario, and
- Living with a neurodegenerative disease including:
- Alzheimer’s Disease/Mild Cognitive Impairment
- Parkinson’s Disease
- Amyotrophic Lateral Sclerosis
- Frontotemporal Dementia
- Or post-stroke
- Or an adult living independently with no diagnosis of a neurodegenerative disease
The study takes place over 8 weeks with the sensors worn for 7-10 days.
Dr. Richard Swartz
Participate from home
Alzheimer’s disease, Amyotrophic Lateral Sclerosis (ALS), Dementia with Lewy bodies (DLB), Frontotemporal dementia (FTD), Healthy volunteer, Lewy Body Dementia (LBD), Mild cognitive impairment, Parkinson /Lewy body spectrum disease, Parkinson's disease-related dementia, Parkinson’s disease, People with vascular cognitive impairment, Stroke, Vascular dementia