At the Huntington’s Disease Association we fund several different research studies that aid in the support and care of people affected by Huntington’s disease. Our funded research looks at how we can help people affected by Huntington’s disease now, with a focus on learning about the disease and treating symptoms. Below you can read about the research studies we support and learn where your research donation money goes.
In 2017, we started to fund a three-year study, led by Dr Una Jones of Cardiff University that aims to bring people together to develop a way for health professionals to guide and support people with Huntington's disease to keep physically active. From her research, a workbook called PAT-HD was produced. PAT-HD, and it's supplementary user guide, can support healthcare professionals to have a discussion with people with Huntington's, their families and carers to agree to a personalised physical activity plan. It includes examples of activities and an overview of the benefits of physical activity. PAT-HD is currently being trialled in three Huntington's clinics in the United Kingdom.
In a world where internet and telephone banking, pin numbers and security codes have become commonplace, people with Huntington’s are at an increased risk of financial abuse, such theft, fraud and exploitation due to their reduced capacity to manage financial information and the complex changes to their thinking capabilities.
Dr Roger Barker and his team at the University of Cambridge have set out to investigate further. We continued to fund this important three-year study in 2018. During the year, the team made contact with people with Huntington’s, their families and those involved in their care and support to hear more about their experiences to see what factors influence financial decision making and what areas make people particularly vulnerable to financial abuse. Through this study, the team hope to find out how much of a problem financial abuse is in Huntington’s and also the factors that could help predict future financial vulnerability.
Swallowing difficulties are likely to affect everyone with Huntington’s disease as the disease progresses. People with Huntington’s often notice problems chewing, controlling food in their mouth, coughing or choking during mealtimes. Currently, there are no effective therapy techniques to treat or rehabilitate swallowing difficulties related to Huntington’s and very limited research into the subject. When Emma Burnip, a Speech and Language Therapist from Newcastle upon Tyne specialising in adult neurology, approached us in 2016 with her PhD proposal to research and find an effective therapy to help people with Huntington’s with swallowing difficulties (dysphagia) we were keen to financially support her study. Her research is currently the only clinical trial in the world investigating a new swallowing therapy for people with Huntington’s disease.
Research can be hard to understand when written in scientific jargon that is difficult to decipher without prior knowledge. Because of this, we support HD Buzz; a Huntington’s disease research website founded by Huntington's disease researchers Dr Ed Wild and Dr Jeff Carroll. Our support helps them continue to post impartial updates on complex research trial findings in a way that was easy to understand for the general public.
If you would like to make a donation towards our research studies please contact our fundraising team at [email protected] or call 0151 331 5444.
Find out the latest news in the world of Huntington’s disease research by visiting our 'Other research studies and resources' page - a section full of information about research written by scientists in plain language.
You can also visit HD Buzz's website for even more information on Huntington's disease research.
If you’ve never visited HD Buzz before take a look at this page for an overview of HD Buzz and Huntington’s disease research.
Find out about the scientific words and phrases used in Huntington’s disease research in the useful HD Buzz glossary.