Extrait

Background and study aims Huntington's disease (HD) is an inherited nervous-system-related disease, which over time causes problems with movement, thinking and behaviour and ultimately difficulties in undertaking usual activities of daily living. We know that keeping active (both physically and socially) is important for any person who suffers with a long-term health condition. This can become very difficult for people with HD given the complex and varied problems that they are faced with on a daily basis. This study aims to analyse two different home-based programmes that have been specifically developed for people with HD, each of which has different attributes, either social or physical. Who can participate? People with HD can participate in this study. What does the study involve? Participants will be asked to attend three research assessments (focussing on movement, thinking and activities of daily living) over a 6-month period at their local HD clinics. After the first assessment, they will be randomly allocated to one of two programmes that will be based in the home. In between the second and third assessment, all participants will continue with their normal activities. At the end of the study, each participant will be offered a brief version of the other programme. What are the possible benefits and risks of participating? There may, or may not be, direct benefits to anyone taking part in this study. The study is being undertaken to find out whether or not the activity programmes are beneficial to people with HD. By taking part, participants will be helping us to answer this question, which may be of benefit to people with HD in the future. The assessments and interventions are unlikely to cause any undue stress and there are no clear risks assoicated with participating in the study. Where is the study run from? The study is managed by the South East Wales Trials Unit, based in Cardiff. Participants are being recruited from the following sites in the UK: 1. Ashgrove House, NHS Grampian, Aberdeen 2. The Barberry, Birmingham and Solihull Mental Health Foundation NHS Trust, Birmingham 3. Southampton General Hospital, University Hospital Southampton NHS Foundation Trust, Southampton 4. Southmead Hospital, North Bristol NHS Trust, Bristol 5. St Mary's Hospital, Central Manchester University Hospitals NHS Foundation Trust, Manchester 6. Sheffield Clinical Genetics Service, Sheffield Children's NHS Foundation Trust, Sheffield 7. The Bennett Centre, North Staffordshire Combined Healthcare NHS Trust, Stoke-on-Trent 8. Cardiff University, Cardiff When is the study starting and how long is it expected to run for? May 2014 to March 2016 Who is funding the study? National Institute for Health and Social Care Research (UK) Who is the main contact? Dr Monica Busse [email protected]

Critère d'inclusion

• Topic: Dementias and Neurodegenerative Diseases Research Network; Subtopic: Huntington?s Disease; Disease: Huntington's disease

Liens

• isrctn
• ictrp