Activity & sedentary behaviour in channelopathy and Myotonic Dystrophy
Research type
Research Study
Full title
Measuring activity and sedentary behaviour in people with Muscle Ion Channelopathy and Myotonic Dystrophy type 1, and assessing the use of individual goal setting to support increasing habitual physical activity activity.
IRAS ID
233200
Contact name
Sarah Holmes
Contact email
Sponsor organisation
University College London Hospital NHS Foundation Trust
Duration of Study in the UK
2 years, 0 months, 0 days
Research summary
This study is divided into two parts. The initial cross sectional observational study is followed by an intervention to help increase activity in people with Muscle Ion Channelopathy and Myotonic Dystrophy.
Part 1: Cross sectional observational study to compare baseline characteristics (including age, use of mobility aids, medication usage) with levels of activity and inactivity using Stepwise Activity Monitors (SAM). Data will be measured for 10 days, for an estimated 88 participants. This will allow assessment of variations associated with the condition between individuals and over time. Participants will also be asked to complete a diary in order to record any falls, changes in symptoms or medication routine.Part 2 - intervention will last 12 weeks, followed by 10 days of wearing the activity monitor. The intervention involves support to set individual goals to increase activity over 12 weeks using a pedometer and an activity diary. Participants will be supported via telephone. At the end of the 12 weeks intervention period participants will be re-issued with the activity monitor for a further 10 days.Information leaflets to educate participants about the importance of activity, and individual goal sheets will be used.
Data arising from this study will be analysed, with end measurements for each person compared to baseline data, as well as analysis between individuals and conditions.
All people attending disease specific clinics will be invited to be involved in this project. The aim is for each participant to use the activity monitor for 10 days, after which units will be returned to the researchers by post so that they can be cleaned, the single patient use strap replaced and then re-issued. This will ensure data and information about as many people as possible can be recorded and interpreted to best understand patterns of activity and inactivity in the populations included.
REC name
South Central - Berkshire Research Ethics Committee
REC reference
17/SC/0659
Date of REC Opinion
6 Dec 2017
REC opinion
Favourable Opinion