HDSA 2026: Austedo’s benefits extend beyond chorea treatment
Drug improved quality of life for both patients and caregivers
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Teva Pharmaceuticals’ Austedo (deutetrabenazine) and its extended-release formulation, Austedo XR — approved to treat chorea, or involuntary movements, in people with Huntington’s disease — have functional and social benefits for both patients and their caregivers.
That’s according to real-world data presented today by Debbi Fox-Davis, Teva‘s director of patient engagement and advocacy, and Hannah Roth, Teva’s medical science liaison, at the 41st Huntington’s Disease Society of America (HDSA) annual convention, being held June 25-27 in Phoenix.
The oral presentation was titled “HD Chorea Journey: Voices, Challenges, & Hope,” and was part of the “More Than Movement: Understanding Chorea and its Impact on Daily Life” afternoon session. Teva is the convention’s presenting sponsor.
“In this analysis, many patients and care partners reported real-world improvements, including greater ease with daily tasks, a more active social life, reduced feelings of embarrassment, and an improved ability to stay engaged in work or other meaningful activities,” Pooja Gandhi, Teva’s medical director of movement disorders, told Huntington’s Disease News in a written Q&A. “These findings highlight that treatment benefits are not only clinical, but also personal and functional,” Gandhi added.
Trials showed benefits, but what about real-world impact?
Chorea refers to the involuntary, dance-like movements that are a hallmark symptom of Huntington’s, a progressive neurodegenerative disorder caused by an inherited mutation in the HTT gene.
“Chorea is one of the most visible and disruptive symptoms of Huntington’s disease, often affecting coordination and making everyday activities more difficult,” Gandhi said.
Researchers believe that excessive release of dopamine, a chemical messenger molecule that helps regulate movement, contributes to chorea.
Austedo and Austedo XR are approved to treat Huntington’s-related chorea. The oral medications have the same active ingredient, which blocks the activity of vesicular monoamine transporter 2 (VMAT2), a protein that typically helps nerve cells release dopamine. As such, Austedo/Austedo XR are expected to reduce excess dopamine, and thereby help ease chorea.
The main difference between Austedo and Austedo XR is how long the active ingredient lasts in the bloodstream. Austedo XR is longer-lasting, allowing for less frequent dosing (once daily instead of twice daily, typically).
“Before the introduction of VMAT2 [blockers], treatment options for Huntington’s disease chorea were limited, leaving many patients struggling to manage involuntary movements in their daily lives,” Gandhi said. “The availability of Austedo, and more recently Austedo XR, has provided an important option for symptomatic treatment, helping to reduce chorea and support patients’ ability to function more comfortably in their everyday activities.”
Clinical trials that supported Austedo’s initial approval demonstrated that the medication is effective at reducing Huntington’s-associated chorea. But because these studies use strict eligibility criteria and standardized outcomes, real-world studies “play an important role in helping us understand how a medication performs in everyday clinical practice, where patient experiences and care settings are more varied than in controlled clinical trials,” Gandhi said.
“They can capture outcomes that matter most to patients and caregivers, such as day-to-day functioning and quality of life, that aren’t always reflected in clinical trial data,” she added.
60% of patients saw improved social, emotional well-being
Therefore, the Huntington Study Group, a research organization, conducted a real-world, online study involving 192 adult Huntington’s patients and 233 of their caregivers to evaluate the burden of chorea on daily activities, as well as the perceived efficacy of Austedo or Austedo XR treatment.
Before treatment, up to 84% of Huntington’s patients said chorea caused social or emotional disruptions or interfered with their participation in work and other everyday activities.
After treatment, about three-quarters of patients reported a reduction in chorea severity, and 60% or more said they experienced improvements in social and emotional well-being and participation in everyday activities.
Patients reported that treatment allowed them to “eat well without spilling particles on [themselves],” “[go] out to places with friends and family [feeling] more comfortable,” and “take public transportation without being stared at.”
“Even modest reductions in involuntary movements can help people feel more in control, supporting greater independence and improved emotional well-being,” Gandhi said.
Like patients, many caregivers (up to 84%) reported social or emotional disruptions. Chorea also affected many caregivers’ participation in activities and attendance at work or school. After the person they care for started Austedo or Austedo XR, over 78% of caregivers reported improvements in these areas.
Caregivers reported that they could “get more restful sleep,” “enjoy family time without constant interruptions,” and “focus on personal hobbies and interests again.”
“Together, these findings suggest that reducing chorea may help to relieve some of the practical and emotional demands placed on care partners, improving quality of life for patients and their supporters, alike,” Gandhi said.
Symptom management remains a ‘critical component of care’
Austedo, Austedo XR, and other currently approved therapies for Huntington’s can help with symptom relief, but they don’t affect underlying disease progression. This means that they can’t slow the worsening of symptoms or cure the condition.
Yet, even with the potential approval of disease-modifying therapies — a milestone that seems closer than ever — Gandhi believes existing medications will remain highly relevant. “Symptom management is likely to remain a critical component of care, and managing chorea can help patients better benefit from other therapeutic advances,” she said. “This highlights the importance of a multidimensional treatment approach.”
Gandhi also emphasized that as research continues to progress, it is important to recognize and address the needs and priorities of people with Huntington’s and their caregivers.
“This study underscores the importance of directly listening to patients and care partners when evaluating treatment impact, ensuring research focuses not only on measurable outcomes, but also on what matters most in daily life,” Gandhi said. “Progress in understanding and managing this disease depends on continued partnership among patients, families, clinicians, researchers, and advocacy groups.”
Note: The Huntington’s Disease News team is providing virtual coverage of the Huntington’s Disease Society of America’s annual conference June 25-27. Go here to see the latest stories from the conference.
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