Journal of Huntington's Disease

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Journal of Huntington's Disease

A high quality journal that gives equal weight to original research in basic science, translational Editors-in-Chief

Blair R.

The Journal of Huntington's Disease is an international multidisciplinary journal to facilitate progress in understanding the genetics, molecular correlates, pathogenesis, pharmacology, diagnosis and treatment of Huntington's disease and related disorders. The journal publishes research reports, reviews, short communications, letters-to-the-editor, and will consider research that has negative find

ings. The journal is dedicated to providing an open forum for original research in basic science, translational research and clinical medicine that will expedite our fundamental understanding and improve treatment of Huntington's disease and related disorders. Leavitt, MD
The University of British Columbia
Vancouver, BC, Canada
Email: b.leavitt@iospress.com

Leslie M. Thompson, PhD
University of California, Irvine
Irvine, CA, USA
Email: l.thompson@iospress.com

To view the full list of the Editorial Board, please visit: http://www.iospress.nl/journal/journal-of-huntingtons-disease/?tab=editorial-board.

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

10/03/2026

💪 Exercise and Huntington’s Disease: More Than Just Movement

A new study explored the impact of moderate-intensity exercise during a four-week inpatient rehabilitation program for people with mid-stage Huntington’s disease (HD).

Participants were split into two groups:
🏋‍♀ Exercise Group – performed physical activities such as walking, resistance training, adaptive cycling, and water exercises.
🐴 Control Group – performed non-physical activities such as hydrotherapy, horse mediation, activities promoting emotional/physical relaxation and cultural activities.

Key Findings:
• Exercise didn’t significantly change motor scores compared to standard rehab.
• Exercise reduced anxiety, depression, apathy, and psychosis symptoms, whilst enhancing executive function and attention.
• The control group experienced improved psychological symptoms like depression, apathy, and irritability.

Takeaway: Exercise isn’t just about physical fitness, it supports mental health and cognitive function beyond standard care too. Long-term support after rehab may help maintain these benefits.

📖 Read the full study to learn more about how exercise can complement HD rehabilitation: https://journals.sagepub.com/doi/epdf/10.1177/18796397261422975

02/03/2026

❓What makes good care in nursing homes for residents with Huntington’s disease (HD)?

A new qualitative study explores this question by listening to the people who know best: formal caregivers (staff) and informal caregivers (family members) in three specialised nursing homes in the Netherlands.

👩‍⚕️ Formal caregivers emphasised supporting each person with HD in maintaining their autonomy, while also recognising areas where assistance is needed. They also highlighted that emotional support, attention to nutritional needs, and palliative care are all essential components of high-quality care for these individuals.

👨‍👩‍👧‍👦 Informal caregivers noted the need for a daily routine, supportive conversations, and a pleasant atmosphere in the nursing home were all important when caring for an individual with HD.

Both formal and informal caregivers emphasised the need for well-trained staff, effective teamwork, and sufficient staffing levels to ensure high-quality care for people with HD.

Bottom line: Whilst formal and informal caregivers have different perspectives on what is necessary for good care in people with HD, they agreed on the importance of a skilled and familiar care team to best support the individual’s needs.

🔗 To read more about this article, follow the link: https://journals.sagepub.com/doi/epub/10.1177/18796397251410253

23/02/2026

🧰 Tools to measure cough dysfunction in HD

People with Huntington’s disease (PwHD) often have a weaker cough. That might not sound serious, but a strong cough is essential for clearing food, drink, or saliva from the airway. When coughing is weak, the risk of aspiration pneumonia, the leading cause of death in people with HD, increases.

So, what if there were simpler tools?

A recent research study explored whether two other measures could help identify cough problems in people with HD:
🖐️ Handgrip strength: how hard someone can squeeze a handheld device that measures grip force.
🫁 Index of pulmonary dysfunction: a measure of how well the lungs are working overall.
Bottom line: Both handgrip strength and overall lung function showed promise in detecting cough dysfunction. This could help doctors to diagnose breathing issues in PwHD earlier, to prevent serious complications in the future.

🔗 To read more about this review, follow the link: https://journals.sagepub.com/doi/epub/10.1177/18796397251385607

09/02/2026

🇻🇪 The Girl at the End of the World

This editorial article presents a deeply personal reflection by Alex Fisher, a Senior Occupational Therapist in Birmingham, UK, on humanitarian and care efforts for individuals with Huntington’s disease (HD) in Barranquitas, a small fishing village in Venezuela. This country has the highest known concentration of people with HD worldwide, largely stemming from a single ancestral lineage in the Lake Maracaibo region.

💜 Drawing on her personal experience, Alex explores the creation of the Caregivers’ Programme and the ongoing work of Factor-H and Habitat LUZ to improve the lives of people affected by HD in this community. This is not a scientific paper, but a narrative of what it is like to witness suffering up close, and what stays with you long after you leave. No prior knowledge of HD is required to read this piece; it is about people, the struggles they face and their strength in the most difficult circumstances.

🔗We invite you to read the article and reflect on the lives and stories it brings into view: https://journals.sagepub.com/doi/epub/10.1177/18796397261416568

02/02/2026

🧬 Intermediate alleles in HD: what we know

Some people who undergo genetic testing for HD have intermediate alleles. This means they have 27-35 CAG repeats. Whilst these individuals will not go on to develop HD, scientists are still learning what, if any, effects they might have on their health.

A recent review looking at previous studies between 1993 and July 2024 found that some people with intermediate alleles showed HD-related (and unrelated) symptoms, or differences in brain scans. However, these symptoms were not always specific to HD as they were also seen in people who do not have HD.

✅ Bottom line: having an intermediate allele doesn’t mean you will develop HD, but research continues to explore what it might mean for overall health.

🔗 To read more about this review, follow the link: https://journals.sagepub.com/doi/epub/10.1177/18796397251397683

09/01/2026

✨ Welcome to 2026! ✨

As we move into the new year, we’re reflecting on how to make our social media spaces more engaging, inclusive, and meaningful for our global community. 🌏💡

We’d love to hear from you: how do you like to engage with academic content online? What formats, topics, or types of discussion would make you most excited to interact with us this year? Your input will help shape content that connects and inspires across borders.

Share your thoughts in the comments, we can’t wait to learn from you! 💬

22/12/2025

As the year comes to a close, we’d like to wish everyone in the global Huntington’s disease community a peaceful holiday season.

We’re incredibly grateful to people with Huntington’s, their loved ones, advocates, researchers, and clinicians who continue to share knowledge and hope throughout the year.

Wishing you moments of rest, connection, and kindness, wherever you are in the world. 💙✨

Happy Holidays from all of us.

15/12/2025

🧠 Caring for people with HD (PwHD) can be incredibly challenging.

💜 Caregivers play a vital role in supporting PwHD, however, providing this support often comes with significant pressures.

A recently published review article brought together evidence from across the literature to explore what shapes the challenges faced by caregivers of PwHD. This included:

• The severity of symptoms experienced by the PwHD
• The availability of external support
• The caregiver’s own mental health

🚨 These findings highlight the urgent need for targeted support services and interventions that recognise and respond to the specific needs of caregivers for PwHD.

📖 See more details here: https://journals.sagepub.com/doi/full/10.1177/18796397251377237

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