The Food and Drug Administration (FDA) has selected the University of Rochester Medical Center (URMC) to lead a groundbreaking study aimed at developing new digital measures to track Huntington’s disease progression. The effort will focus on using wearable technology to detect early signs of the neurodegenerative condition, potentially speeding up the development of new treatments.
The project, which will be conducted by URMC’s Center for Health + Technology, seeks to create objective, digital tools that can provide a clearer picture of how Huntington’s disease advances, especially in its early stages. This could pave the way for more effective clinical trials and therapies. The initiative builds on the center’s decade-long experience in using digital health technology to study Parkinson’s disease.
“Much like with Parkinson’s, our current methods of measuring Huntington’s disease progression are often subjective and episodic,” said Dr. Jamie Adams, the study’s lead investigator and neurologist at URMC. “This research will help us identify subtle early changes, which are crucial for targeting early-stage patients in trials for disease-modifying treatments.”
The study is funded under the FDA’s Digital Health Technologies for Drug Development program. Researchers will focus on two key motor symptoms of Huntington’s disease: mobility, particularly gait, and chorea, the involuntary movements characteristic of the disease. Using digital sensors worn on the wrist and trunk, the team will collect continuous data remotely from individuals in the early stages of Huntington’s, as well as from control participants.
This approach, Adams said, could reveal meaningful patterns in how these motor impairments emerge, which would be vital for both diagnosing the disease earlier and measuring treatment effectiveness in clinical trials. The study will also use innovative symptom mapping to ensure the findings are directly relevant to those living with Huntington’s disease.
“We believe that early-stage changes in gait and chorea are important markers of disease progression,” said Adams. “Tracking these subtle impairments could give us reliable indicators for how the disease advances over time.”
The study’s findings could have wider implications beyond Huntington’s disease, potentially impacting the understanding and treatment of other neurological disorders, such as Parkinson’s, that also involve involuntary movements.
Collaborators on the study include experts from Columbia University, Tel Aviv University, and the University of Massachusetts. Participant recruitment for the study is expected to begin later this year.
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