Journal of Huntington's Disease

25/08/2026

🥣 PEG-Tube Placement in People with Huntington’s Disease

Swallowing difficulties (dysphagia) are common in Huntington’s disease (HD), but there are no clear recommendations for when a PEG-tube should be placed.

A new study reviewed medical records from 14 people with HD who received PEG-tubes at two specialist HD centres in Sweden.

Key Findings:

Severe Dysphagia and Weight Loss Were Common
Severe dysphagia was documented in 11 people and weight loss in 10.

Timing Was Difficult to Predict
Dysphagia-related symptoms did not increase as PEG placement approached and weight trends were inconclusive. Neither of these factors were used alone to determine the optimal timing for PEG-tube placement

Patient Preferences May Be Important
A request for PEG placement combined with weight loss and/or severe dysphagia appeared to be a strong indicator for placement.

Early Discussions Were Common
Information about PEG tubes was documented between 3 months and 4¼ years before placement.

Summary:
The findings highlight the complexity of deciding when to place a PEG tube in HD. Early discussions, alongside severe dysphagia, weight loss, and the wishes of the person with HD, may all be important when making this decision.

Read the full paper: https://journals.sagepub.com/doi/full/10.1177/18796397261478175

19/08/2026

💊 Real-World Evidence on Deutetrabenazine for Movement Symptoms in People with Huntington’s Disease

Chorea is a common movement symptom of Huntington’s disease (HD), but less is known about how treatments to reduce chorea perform in real-world clinical practice.

A new study has examined real-world treatment patterns, outcomes and tolerability of deutetrabenazine (DTBZ) in 80 people with HD-associated chorea.

Key Findings:

Chorea Improved
Among 50 patients with qualifying pre- and post-treatment Unified HD Rating Scale–Total Maximal Chorea (TMC) scores, the mean score decreased by 4.2 points post-treatment with DTBZ, with 84% experiencing an improvement in chorea associated with HD.

Improvements Occurred Across Treatment Groups
TMC scores decreased in patients who were new to treatment and those who switched from tetrabenazine (TBZ) to DTBZ.

Potential Benefit After Previous TBZ Treatment
Among seven patients who had previously stopped TBZ because it was ineffective, five experienced an improvement in TMC scores with DTBZ. However, the small sample size means these findings should be interpreted cautiously.

Generally Well Tolerated
One or more adverse events were recorded in 33.8% of patients, with sedation/fatigue among the most common.

Summary:

Overall, the findings from this article support DTBZ as a treatment option for HD-associated chorea, including for people with previous TBZ exposure. However, further research is needed to confirm these findings in larger and more diverse patient populations.

📖 Read the full paper: https://journals.sagepub.com/doi/abs/10.1177/18796397261468475

03/08/2026

💜 The Holistic Burden of Huntington's: A Multigenerational Impact on Individuals and Family Caregivers

Huntington's disease (HD) affects far more than the brain. A new qualitative study, involving people living with HD and family caregivers across six European countries, highlights the far-reaching impact of the condition on individuals, families and future generations.

Researchers explored the lived experiences of people affected by HD, revealing four key themes.

Key Findings:

1. HD affects every aspect of life – Participants described how HD disrupted daily activities, employment, relationships and future plans, with changes in mood, thinking and behavior often having the greatest impact on quality of life.

2. Caregiving carries a heavy burden – Family caregivers experienced significant physical, emotional and financial strain. Many had been caring for loved ones from a young age or found themselves supporting multiple family members across generations.

3. HD is a multigenerational condition – Participants spoke about growing up with HD in their families, how it influenced decisions about having children, and the expectation that caregiving responsibilities would continue into the future.

4. Holistic support is urgently needed – While many felt hopeful about future research, there was concern that new treatments may not arrive in time to help them. Participants called for more coordinated, family-centred care that combines medical, psychological, social and financial support, alongside earlier diagnosis and proactive care planning.

The findings suggest that healthcare systems must evolve beyond treating the symptoms of HD alone, embracing a more holistic approach that supports not only those living with the condition but also their families and caregivers.

📖 Read the full paper for more details: https://journals.sagepub.com/doi/full/10.1177/18796397261443133

28/07/2026

💬 End-of-Life Planning in HD: Why Conversations Matter

Planning for the future is never easy, but for people affected by Huntington's disease (HD), discussing end-of-life wishes early can help ensure that care reflects what matters most to them. A new systematic review explored how people with HD, their families and healthcare professionals experience these important conversations.

Researchers reviewed the available evidence, identifying eight studies that explored experiences of end-of-life planning discussions (EOLPD) in HD. Four key themes emerged from the findings.

Key Themes:
1. The value of EOLPD – There were contrasting views on the effectiveness of EOLPD for supporting people living with HD.

2. To talk or not to talk – While some people wanted to discuss future planning early, others avoided these conversations due to fear, uncertainty or emotional distress.

3. A clear vision of the future – For some, discussing the future provided reassurance and a sense of control. For others, it heightened fear and anxiety by confronting the realities of condition progression.

4. The right people at the right time – Participants highlighted the importance of having these discussions with the right people, and at a time that feels appropriate for the individual and their family.

This review suggests that more research is needed to better understand how people with HD and their families want EOLPD to take place, and to support healthcare professionals in leading them with confidence and compassion. The authors also highlight the need for more research on planning for natural death in HD, as much of the existing literature has focused on euthanasia instead.

📖 Read the full review for more details: https://journals.sagepub.com/doi/full/10.1177/18796397261428341

05/07/2026

🧠 MMSE or MoCA: Which cognitive test is better for Huntington's disease?

Changes in thinking and memory can begin early in people with Huntington's, even before they become obvious in everyday life. Detecting these changes accurately is important for monitoring the progression of Huntington’s and evaluating treatments.

So, which cognitive test works best?

A recent study compared two widely used screening tools in people with HD:

Mini-Mental State Examination (MMSE): A brief test commonly used to track changes in cognitive function over time.

Montreal Cognitive Assessment (MoCA): A cognitive screening test designed to detect more subtle changes in thinking, memory, attention, and executive function.
Bottom line: Both tests have strengths, but they measure different aspects of cognitive change. MoCA was better at identifying early cognitive changes and distinguishing between different stages of HD, including early disease stages defined by the Huntington's Disease Integrated Staging System (HD-ISS). Meanwhile, MMSE was better at tracking cognitive decline over time. Using both tests together may give clinicians the most complete picture of cognitive progression.in people with Huntington’s

🔗 To read more about this study, follow the link: https://journals.sagepub.com/doi/epub/10.1177/18796397261461641

11/06/2026

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29/05/2026

We are delighted to share the release of a Special Review Issue in the Journal of Huntington’s Disease: “Neurodevelopment in Huntington’s disease.”

Thank-you to the Review Editors Professors Peg Nopoulos (University of Iowa) and Elena Cattaneo (University of Milan). This timely collection brings together leading experts to explore an emerging and important question in Huntington’s disease (HD) research: how early brain development may shape the course of the condition.

While HD is often understood as a neurodegenerative condition, growing evidence suggests that changes in neurodevelopment (brain development) may also play a role. Given the critical function of the huntingtin protein (the protein linked to HD) in normal brain development, this perspective opens up new ways of thinking about disease mechanisms, progression, and even resilience.

Across this issue, contributors examine diverse approaches and evolving frameworks that are reshaping our understanding of HD, from developmental biology to clinical insights. At the same time, key questions remain: how do early changes influence later outcomes, and could they have both positive and negative effects in people with HD?

We hope this collection sparks discussion, collaboration, and new avenues of research across the HD community and beyond.

Explore the full Special Issue: https://journals.sagepub.com/toc/huna/15/2

30/04/2026

💊 Managing Irritability in HD: The Search for Solutions

Irritability is one of the most burdensome symptoms of Huntington’s Disease (HD), impacting the daily lives of both patients and their caregivers. Currently, there are no FDA-approved medications specifically for this symptom.

A recent pilot study investigated whether dextromethorphan/quinidine (DM/Q), better known as NUEDEXTA®, could help manage irritability in people with HD.

The Study Setup:
Researchers conducted a 13-week randomized, double-blind, crossover trial. Participants were split into two phases:
• 🧪 The DM/Q Phase – Received a 20/10 mg dose (gradually increased to twice daily).
• 💊 The Placebo Phase – Received a placebo (dummy pill) with no active medication.

Key Findings:
• Whilst the DM/Q and Placebo phases both reduced irritability to some extent, there was no significant difference between these groups in reducing irritability overall.
• There was no statistically significant advantage for the DM/Q phase over the placebo in reducing irritability.
• The drug did not show any additional benefits for motor skills, cognitive function, or other behavioral symptoms compared to the placebo.

Takeaway:
While DM/Q did not prove more effective than a placebo in this specific pilot study, the research highlights the critical need for larger trials and new therapeutic strategies. It is important to remember that understanding what doesn't work is a vital step toward finding what does.

📖 Read the full study for more details on the clinical trial results: https://journals.sagepub.com/doi/epub/10.1177/18796397251411112

13/04/2026

🧠 Can brain training change how the brain works in Huntington’s disease (HD)?
A small study explored whether computerized cognitive training (CCT) could improve brain function and communication between different brain regions in people in the pre-manifest or early-stages of HD.

🔬 Participants completed a 12-week programme of CCT or received monthly lifestyle education newsletters. MRI scans were used to measure brain activity and connectivity at the beginning and end of the study.

💻 While CCT led to improvements in cognitive task performance, it did not result in measurable changes in brain activity or connectivity, either during tasks or at rest. This may be due to the small sample size, highlighting the need for larger studies to better understand the potential effects of CCT on the brain.

💡 Bottom line: CCT may help with cognitive performance, but it’s still unclear whether it changes the underlying brain networks in HD. More research is needed to explore this further.

🔗 To read more about this article, follow the link: https://journals.sagepub.com/doi/epub/10.1177/18796397251399752

30/03/2026

❓ Why is weight loss so common in Huntington’s disease (HD) and makes weight gain so difficult to manage? A new qualitative study explores these issues by listening to both healthcare professionals and people affected by HD across the UK.

🌍 Professionals highlighted that while monitoring weight in HD is widely recommended, this can be difficult to sustain long-term. This is because access to specialist support can vary significantly, creating a “geographical lottery” in care.

🍽️ People with HD and their caregivers described how it can be a struggle to keep up with the volume of food required in a day, leading to a feeling of constant eating.

🧠 Both professionals and people with HD pointed to cognitive and psychological factors, like apathy, difficulties with planning, and lack of familial support as major barriers to eating well, alongside physical challenges such as swallowing difficulties and involuntary movements.

Bottom line: Weight loss in HD isn’t just about food intake but can be shaped by a complex mix of physical, cognitive, emotional, and social factors. This highlights the increasing need for proactive and personalised care for people with HD.

🔗 To read more about this research, follow the link: https://journals.sagepub.com/doi/epdf/10.1177/18796397261435111