Clinical research news for Huntington's disease families
30 August 2006
The Huntington's disease clinical research team at the UCL Institute of Neurology has launched a new website that will bring the latest news about clinical research in Huntington's disease (HD) to patients, relatives and carers in the UK and worldwide.
The site will be a source of the latest information about all clinical research in HD being carried out through the HD Multidisciplinary Clinic of the National Hospital for Neurology & Neurosurgery, Queen Square, by UCL researchers.
The site contains: information about all studies currently in progress and those planned; recently published research findings from UCL researchers; a global HD research update; an introduction to the HD Multidisciplinary Clinic; general information about HD and an interactive study finder tool to identify studies that may be suitable for each visitor.
HD is an inherited, progressive degenerative neurological disorder that affects about 1 in 10,000 people in the UK - with five times that number at risk of developing the disease. There is no cure and no treatments have been proven to slow down the disease. However, several promising potential treatments now need to be tried in human volunteers.
Dr Sarah Tabrizi (UCL Institute of Neurology), Lead Consultant Neurologist of the HD Multidisciplinary Clinic, says: "The website will move HD research in the UK forward by bringing the latest information about taking part in clinical research straight to the homes of HD gene carriers, their families and carers. We expect the site to become an invaluable and trusted resource for our patients to get informed and get involved in HD research."
Hundreds of patients and their families already take part in research through the HD Multidisciplinary Clinic, with eight major clinical studies in progress and more on the way. As well as locally based research, UCL researchers and volunteers are involved in several major international studies, including the Huntington Study Group's PREDICT-HD project and the European HD Network's REGISTRY initiative. The team is also closely linked with the UK HD Network and Euro-HD.
Dr Tabrizi says: "For patient and family volunteers already involved in clinical research, the site is a way of keeping up-to-date with the latest news and exciting projects coming soon. For those who have never taken part in research, the site is a way to find out where HD research is up to, what taking part in research is like and how to get involved. We also hope to reach those HD family members who may want to take part in research but don't necessarily want to come to the HD clinic."
To find out more about the HD Multidisciplinary Clinic and the website, or Euro-HD, use the links at the bottom of this article.
Image: Dr Sarah Tabrizi