Assessing mobility and balance in Huntington's disease (Version 1.0)
Research type
Research Study
Full title
The development of a functional mobility and balance assessment for people with Huntington’s disease
IRAS ID
162830
Contact name
Anne Rosser
Contact email
Duration of Study in the UK
2 years, 0 months, 1 days
Research summary
Huntington’s disease (HD) is an inherited brain disorder that causes problems with movement, thinking and behaviour. As part of the movement disorder, people with HD can suffer from mobility and balance abnormalities causing problems with daily life activities. As there is currently no disease-modifying treatment for people with HD, there is a need to find strategies to improve these deficits and therefore improve quality of life. This can only be effectively achieved if there are methods to accurately assess mobility and balance abnormalities that are reflective of the patient’s real-life problems. However, assessments currently used are not specific for the difficulties that people with HD commonly suffer from.
The aim of this study is to develop a functional mobility and balance assessment relevant to people with HD. This will include tests of walking, turning, stepping, changing body position, reaching and grasping. To quantify participant performance objective instruments will be used including small, non-invasive sensors worn by the participants during performance and time taken. A total of 70-100 people at varying stages of HD will be recruited for the study and a further 20-30 people that do not have HD will be recruited as part of a control group. Participation will require a visit to the clinical setting at least once for about 40 minutes. Participants will be invited to redo the potential items three times over the course of a year to test the assessment reliability and the ability to measure change over time. At least one, but probably two, of these visits can be timed to coincide with the individual’s usual clinic appointment.
The data gathered in this study will be used to develop a functional mobility and balance assessment specifically for people with HD that will ultimately help drive the development of a much needed treatment for people with this disease.REC name
Wales REC 2
REC reference
14/WA/1195
Date of REC Opinion
24 Nov 2014
REC opinion
Further Information Favourable Opinion