Real-World Survey Data Suggest Deutetrabenazine May Improve Quality of Life Measures in Huntington Disease Chorea

New real-world survey findings presented at the 5th Annual Advanced Therapeutics in Movement and Related Disorders (ATMRD) Congress, held by the PMD Alliance from June 4-8, 2026, suggest that treatment with deutetrabenazine (Austedo; Teva Pharmaceuticals) or its extended-release formulation (Austedo XR) may be associated with patient- and caregiver-reported improvements in quality of life among individuals living with Huntington disease (HD)-associated chorea.¹

The analysis, conducted through the myHDstory platform, evaluated the impact of chorea on daily functioning and assessed perceived changes among patients receiving deutetrabenazine treatment. Coming into the study, HD chorea was reported to have substantial effects on multiple aspects of daily life before treatment initiation.

Among respondents, 71% to 84% reported interference with social functioning, 68% to 77% reported effects on emotional wellbeing, 70% to 78% noted disruption of daily activities, and 67% to 82% reported impacts on vocational or recreational activities. Caregivers similarly described significant burden, with 73% to 84% reporting social impacts and 71% to 84% reporting effects on emotional wellbeing.

“Huntington’s disease chorea extends beyond its physical symptoms, disrupting patients’ emotional wellbeing, social functioning and sense of self, while also placing immense strain on caregivers,” study investigator Daniel Claassen, MD, MS, professor of neurology at Vanderbilt University Medical Center and chief executive officer of the Huntington Study Group, said in a statement.² “These real-world findings demonstrate the importance of effective chorea management to aid in preserving independence longer and alleviating those impacts for both patients and caregivers.”

The decentralized, noninterventional study enrolled US adults aged 18 years or older with self-reported HD chorea. Participants completed online questionnaires regarding symptom severity, treatment experiences, quality-of-life impacts, and personal goals for symptom management. Individuals receiving deutetrabenazine therapy completed additional assessments, including the Patient Global Impression of Change (PGIC) scale. Caregivers of patients with HD chorea also completed surveys regarding the effect of caregiving responsibilities on their own daily functioning.

READ MORE: Votoplam Shows Dose-Dependent Slowing of Disease Progression in Stage 2 Huntington Disease

Among patients treated with deutetrabenazine or its extended-release formulation, 74% reported improvement in chorea symptoms on the PGIC scale. Investigators also reported that more than 85% of surveyed patients described improvements in goals related to daily activities such as dressing, walking, and eating, as well as social engagement with friends and family. In addition, 77% of caregivers reported improvements in personal goals related to social participation and emotional wellbeing following reductions in chorea burden among those they cared for.

Although the findings provided insight into patient- and caregiver-reported experiences, the results should be interpreted in the limitations of the study design. The analysis relied on self-reported survey responses, lacked a control group, and did not include objective assessments of chorea severity. In addition, the data were presented at a scientific meeting and have not yet been published in a peer-reviewed journal.

For context, HD is a progressive, inherited neurodegenerative disorder characterized by motor, cognitive, and psychiatric manifestations. Chorea, one of the most recognizable motor features of the disease, can substantially impair functional independence and quality of life. While symptomatic therapies are available, treatment decisions often require balancing motor benefits with potential neuropsychiatric adverse effects.

Deutetrabenazine is a vesicular monoamine transporter type 2 (VMAT2) inhibitor approved by the FDA in 2017 for the treatment of chorea associated with HD after demonstrating significant reductions in chorea severity in the phase 3 First-HD trial.² In 2023, the FDA approved deutetrabenazine’s extended-release formulation, a once-daily extended-release formulation indicated for adults with HD-associated chorea and tardive dyskinesia.³ VMAT2 inhibition remains a cornerstone of pharmacologic management for chorea, with additional treatment options now available in the class.

The current survey findings add patient-centered perspectives to the growing body of evidence surrounding chorea management in HD. However, additional prospective studies incorporating validated quality-of-life instruments and objective clinical measures may help clarify the extent to which improvements in chorea translate into broader functional and caregiver-related benefits.

“What we are seeing reinforced from these real-world data is how deeply Huntington’s disease chorea affects patients – physically, emotionally and in their ability to function day-to-day – and the strain it can place on their care partners,” Eric Hughes, MD, PhD, Executive Vice President, Global R&D and Chief Medical Officer at Teva, said in a statement.¹ “That’s why our patient-centric approach is fundamental to our work at Teva, and why we are proud to see AUSTEDO and AUSTEDO XR delivering such meaningful improvement for patients and making a real difference in the lives of those impacted.”

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REFERENCES
1. Teva Presents New Data on AUSTEDO® (deutetrabenazine) tablets and AUSTEDO XR® (deutetrabenazine) extended-release tablets that Show Patient- and Caregiver-Reported Improvements in Huntington's Disease Chorea. News release. Teva Pharmaceuticals. June 5, 2026. Accessed June 5, 2026. https://www.tevapharm.com/news-and-media/latest-news/teva-presents-new-data-on-austedo-deutetrabenazine-tablets-and-austedo-xr-deutetrabenazine-extended/
2. Huntington Study Group, Frank S, Testa CM, et al. Effect of Deutetrabenazine on Chorea Among Patients With Huntington Disease: A Randomized Clinical Trial. JAMA. 2016;316(1):40-50. doi:10.1001/jama.2016.8655
3. Teva Announces AUSTEDO® XR (deutetrabenazine) Extended-Release Tablets Now U.S. FDA Approved as a One Pill, Once-Daily Treatment Option for Clinically Therapeutic Doses (24–48 mg/day). News release. Teva Pharmaceuticals. May 29, 2024. Accessed June 5, 2026. https://www.tevapharm.com/news-and-media/latest-news/teva-announces-austedo-xr-deutetrabenazine-extended-release-tablets-now-u.s.-fda-approved-as-a-one-pil/