New Website Brings Latest Clinical Research News to Huntington's Disease Families

HD Lighthouse Contributing Editor's Comment: This Web site will be a wonderful resource for our UK readers who are looking for clinical trials in which to participate plus the information about the research will be of interest to everyone.

-- Marsha L. Miller, Ph.D.
Posted to the HDL: 03 Sep 2006

The Huntington’s disease clinical research team at the Institute of Neurology, University College, London, announces the launch of 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, hdresearch.ucl.ac.uk, 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 and Neurosurgery, Queen Square, London, by researchers at UCL Institute of Neurology.

The site contains:

• Information about all studies currently in progress
• News about planned studies
• Recently published research findings from UCL researchers
• Global HD research update
• An introduction to the HD Multidisciplinary Clinic
• General information about HD
• An interactive study finder tool to identify studies that may be suitable for each visitor
• Downloadable information sheets and contact information for each project

Dr Sarah Tabrizi is the Lead Consultant Neurologist of the HD Multidisciplinary Clinic and leads HD clinical research at UCL Institute of Neurology. “hdresearch.ucl.ac.uk 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,” she says. “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 (www.euro-hd.net).

“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 be seen at the HD clinic,” says Dr Tabrizi.

Additional Information

• Huntington’s Disease (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 the disease
• There is no cure and no treatments have been proven to slow down the disease.
• Several promising potential treatments have been shown to be effective in animal models of HD, and now need to be tried in human volunteers.
• The National Hospital for Neurology and Neurosurgery, Queen Square, London, is a world-renowned centre of excellence for the care of neurological conditions.
• The National Hospital’s HD Multidisciplinary Clinic is featured in the Department of Health Good Practice Guide for Care of People with Long-Term Neurological Conditions.
• UCL Institute of Neurology carries out high quality teaching and research in basic and clinical neurosciences. It carries the highest rating (5*A) from the Higher Education Funding Council for England.

For further information contact:

Dr Ed Wild
+44 8451 555 000 ext 723193
wild@drc.ion.ucl.ac.uk
http://hdresearch.ucl.ac.uk/

Source: Press Release: UCL Institute of Neurology, Queen Square London

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