PENSACOLA, FL, Tuesday, June 24th, 2025 - ActiGraph, a leading provider of wearable technology and scientific services for clinical drug development and academic research, is excited to participate in an important data-collection initiative that will launch at the upcoming Huntington’s Disease Society of America (HDSA) 40th Annual Convention, taking place in Indianapolis, IN, June 26-28th, 2025. CHDI Foundation, a nonprofit biomedical research organization exclusively dedicated to collaboratively developing therapeutics that substantially improve the lives of those affected by Huntington’s disease (HD), is conducting a “pop-up” study at the conference titled “HD Research at Convention series 2025 (HD-RAC25): Assessment of eye movements, gait and balance using digital health technology” followed by an at-home wearable data collection period to also capture real-world measures of function during participants’ daily life.
Physical function and gait will be assessed in over 100 participants, including people with HD and healthy controls, with the aim of generating supportive evidence for the role of digital health technologies (DHTs) in advancing research and drug development for HD.
“Wearable sensors will allow us to better measure how the motor and functional abilities of people with HD change over time, particularly early in the disease course where existing rating scales are less sensitive,” said Matthew Roche, PhD, Director, Outcomes Research at CHDI. “We are excited to partner with ActiGraph and ProtoKinetics to advance our understanding of these changes, with a view to developing new tools for HD research and drug development.”
ActiGraph's participation in the data-collection event will include both in-person and remote assessments. At the conference, participants will perform functional mobility assessments such as a 10-meter walk and timed up-and-go tests while wearing ActiGraph LEAP® devices, enabling digital measures of physical activity and gait. In collaboration with ProtoKinetics (provider of the Zeno Walkway, a gold-standard tool for instrumented gait analysis), ActiGraph’s digital measures will be benchmarked against ground-truth data (i.e., data based on direct observation and measurement) from the Zeno system and synchronized video recordings.
Select participants will then wear the devices at home for several days following the conference to capture real-world measures of gait and activity in their day-to-day life; at the end of the study they will complete a usability survey. This collaboration underscores ActiGraph’s commitment to validating wearable-derived digital outcomes against established clinical standards.
Accuracies of several state-of-the-art algorithms and digital measures will be evaluated in people with HD, providing supporting evidence for the adoption of DHTs in HD research and clinical trials. Quality of life and disease severity questionnaires completed by the participants will be used to determine the correlation between digital measures and clinical meaningfulness and the relevance to patients’ functioning.
“We’re proud to be part of this important effort to transform how HD is studied and monitored and look forward to connecting with the community and fellow innovators driving progress in the field,” said Rakesh Pilkar, PhD, Lead of DHT Solutions, Neuroscience at ActiGraph.
The HDSA Annual Convention is an inspiring gathering of patients, families, caregivers, researchers, and advocates, all coming together to learn, share, and build hope for the future. By expanding the options for objective, continuous data collection on how people with HD function in the real-world, we can enable research and drug development to move forward with more sensitive and patient-centric outcome measures.
About CHDI Foundation, Inc.
CHDI Foundation, Inc. is a privately-funded nonprofit biomedical research organization that is exclusively dedicated to collaboratively developing therapeutics that will substantially improve the lives of those affected by Huntington’s disease. As a collaborative enabler, CHDI seeks to bring the right partners together to identify and address critical scientific issues and move drug candidates to clinical evaluation as quickly as possible. Our scientists work closely with a network of more than 700 researchers in academic and industrial laboratories around the world in the pursuit of these novel therapies, providing strategic scientific direction to ensure that our common goals remain in focus. More information about CHDI can be found at www.chdifoundation.org.
About ActiGraph
ActiGraph is pioneering the digital transformation of clinical research. We empower biopharma companies to unleash the potential of big data and AI with a device-inclusive digital trial platform backed by proven operational, scientific, and regulatory expertise. Used in nearly 250 industry-sponsored clinical trials and appearing in over 25K published scientific papers to date, ActiGraph is the most experienced and trusted wearable technology partner in the industry.
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