Innovative new research study employs the best of brain health assessment techniques and technologies in the comfort of participants’ homes and communities.
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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 (Alzheimer's Disease/Mild Cognitive Impairment, Parkinson’s Disease, Frontotemporal Dementia and Amyotrophic Lateral Sclerosis) or post-stroke, alongside a group of aging adults living independently with no diagnosis of neurodegenerative disease.
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.”
Page 1 of the HANDDS-ONT Clinician's Guide. Access the full guide from our "Get More Information" section below.
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:
2. Adults living independently with no diagnosis of neurogenerative disease are also being recruited as a control.
HANDDS-ONT Core Study Protocol
The HANDDS-ONT core study includes a series of steps that take place over the course of eight weeks, in the participants’ home and community. The exact order of these steps may vary.
Screening and Informed Consent
It all starts with an introduction and screening. Our aim is to ensure that HANDDS-ONT is a good fit for the participant.
Following a successful screening, participants review the informed consent with our study coordinator, to ensure they are aware of everything that is involved with HANDDS-ONT.
Receiving and Reviewing Wearables
Participants receive a package containing three small, wearable sensors. Our study coordinator ensures participants know how to wear the sensors, enabling them to capture data, while minimizing burden.
Wearing Sensors 24/7 for 7-10 Days
Participants are asked to wear the sensors on their chest, wrist and ankle as they go about their day-to-day activities. Our coordinators are available to answer any questions that arise.
Providing Blood Sample
Participants provide a blood sample at a local LifeLabs location.
Participants complete a cognitive health assessment and a short series of mood and quality of life questionnaires – either on the phone or through video-consult with the coordinator. The questionnaires can be completed through an online link.
Reviewing Personalized Health & Activity Report
Specially designed reports, generated from data collected through the wearables, are sent to participants. These are reviewed with study participants and can be shared with their circle of care.
Participants are asked to provide their feedback on the health and activity reports, along with the experience of participating in HANDDS-ONT.
GET MORE INFORMATION
Participate in the HANDDS-ONT study, learn more and access the full Clinician's Guide here.