New treatment for Huntington’s disease developed at The University of Reading has been welcomed by patient support groups as an “invaluable resource” in the fight against the condition.
The groundbreaking project at the School of Psychology and Clinical Language Sciences has created a new tool to measure the wellbeing of people with the incurable genetic brain disease.
Huntington’s disease is a disorder passed down through families in which nerve cells in certain parts of the brain waste away, or degenerate.
Researchers have developed the Huntington’s disease health-related Quality of Life (HDQoL) questionnaire which aims to specifically capture the impact of the disease on the everyday life of sufferers. It is hoped this will put scientists in a better position to evaluate usefulness and benefits of interventions and lead to more effective treatments of the condition.
HDQoL has been welcomed by patients and patient support organisations including the Huntington’s Disease Association (HDA) in the UK. HDA chief executive Cath Stanley said: “I think the questionnaire will be an invaluable resource as it will offer a comprehensive view of how the illness affects individuals using a holistic approach.”
Huntington’s disease is a progressive condition that gradually affects the ability to move, think and reason, and can have a devastating impact on a person’s life.
It affects more than 6,000 people in the UK and around 30,000 people in North America, with many more people – usually the children of those with the disease – considered ‘at risk’ of developing symptoms later in life.
While there is a genetic test that can tell people whether or not they carry the gene for Huntington’s there is no way of knowing when the first symptoms of disease may appear.
Previously, a patient’s quality of life could only be assessed generally, meaning the more specific and unique consequences of Huntington’s disease were missed.
Dr Aileen Ho, who is leading the project, said: “It is vitally important to be able to accurately measure and monitor patient’s wellbeing, and to understand the impact of Huntington’s as they go about their daily lives.