Innovative Research from the Comfort of Home
Innovation in remote patient monitoring
Personalized health & activity reports (self-care)
The HANDDS-ONT Study Launches in Ontario
Brain researchers, clinicians, and people interested in brain health are celebrating the launch of an innovative new research study employing the best of brain health assessment techniques and technologies, in the comfort of participants’ homes and communities.
The HANDDS-ONT study (Health in Aging, Neurodegeneration and Dementias in Ontario) is examining people living with neurodegenerative diseases or post-stroke, alongside a group of aging individuals who serve as controls.
The purposes of this study are to:
- better understand how the diseases studied affect different people
- discover methods to potentially detect the diseases earlier
- find ways to help people manage their daily health related behaviours
HANDDS-ONT is utilizing wearable health and activity sensors, validated questionnaires and the latest genomics techniques to answer questions that have long plagued the brain research community.
Select health and activity data will be collected virtually, using fit-for-purpose* wearable technologies (small sensors worn on the wrist, ankle and chest for 7-10 days), while participants comfortably go about their everyday activities.
Further data will be gathered through mood and quality-of-life questionnaires. Finally, blood samples will be collected to help researchers understand how one’s genetic makeup can potentially lead to 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 better understand aging, with and without a neurodegenerative condition, over a period of time.
Personalized health and activity reports
Participants will receive personalized health and activity reports, based on data from the wearables. These reports can be shared with participants’ circle of care, and may provide guidance for self-care. This aspect of HANDDS-ONT is very exciting for many participants.
“I find this approach of care embedded in research really motivating”, says Shelley, a member of ONDRI’s Patient & Community Advisory Board.
“My mother has dementia. I wish she could participate in this study, but she lives out of province. She has problems sleeping, but she’s not the best historian. One part of the HANDDS-ONT report would show when she is actually sleeping during the night and when she’s not. This information could guide us to help her adjust her bed times. This extra information and knowing that she would be contributing to future improvements in diagnosis and care is really exciting”, continues Shelley.
Participants have the opportunity to provide feedback on this innovative study, for future study design.
What this study means for global research
Dr. Richard Swartz, a Neurologist at Sunnybrook Health Sciences and ONDRI co-lead, is the lead investigator for HANDDS-ONT.
“We are very excited to be launching HANDDS-ONT. This study is based on three years of intense preparation and pilot studies, where we took the best of what we learned in earlier ONDRI research, along with similar studies around the world, and translated it for application in the home and community,” said Dr. Swartz.
He continues: “This first phase of HANDDS-ONT is what we call the core study. We are seeking hundreds of participants for this study, to make the largest impact to the science. We will also be adding focused impact studies, or modules, to the HANDDS core, to hone in on specific aspects of the populations we study, such as issues in Parkinson’s disease or ALS. This study represents a very exciting inroad into the science of neurodegeneration and dementia.”
Who can participate?
HANDDS-ONT is seeking participants who are identified through their care teams, or who discover the study on their own, and would like to inquire further.
1. Ontario residents, 18 years of age or older, who are living with:
a neurodegenerative disease (Alzheimer’s Disease/Mild Cognitive Impairment, Parkinson’s Disease, Frontotemporal Dementia, Amyotrophic Lateral Sclerosis) or are post-Stroke.
2. • Or any adult living independently with no diagnosis of a neurodegenerative disease.
Interested in finding out more about HANDDS?
Please fill out your details below to contact a study coordinator