We would like to inform you of a research study for adults with progressive muscle weakness caused by muscular dystrophy or inclusion body myositis (IBM). It is taking place at King’s College London and is funded by a grant from the Medical Research Council.
The purpose of the study is to investigate ways of measuring resting and active behaviours in people with progressive muscle weakness. The measurement tools that will be tested are a wristband activity monitor and two questionnaires. The researchers are primarily interested in your opinions about these tools.
The accuracy and acceptability of the wristband and questionnaires will be assessed during two testing sessions held at the Guys Hospital campus of King’s College London. Feasible travel costs will be reimbursed. In the week between testing sessions, the wristband will be worn at home to measure movement, heartrate and sleep.
The study is recruiting participants aged over 18 years with inclusion body myositis (IBM) or muscular dystrophy (including facioscapulohumeral muscular dystrophy (FSHD), limb girdle muscular dystrophy (LGMD), Becker muscular dystrophy (BMD), Duchenne muscular dystrophy (DMD), oculopharangeal muscular dystrophy (OPMD), and adults with congenital muscular dystrophies).
The researchers are recruiting people of all activity levels: those who are usually completely inactive, those who are very active and anywhere in between. They are recruiting both ambulant participants and wheelchair users.
If you are interested in taking part in the study please contact the primary investigator: Sarah Roberts-Lewis via e-mail at firstname.lastname@example.org or call on 07593 553 362. Alternatively call Sarah on 020 7848 7862, or contact Dr Claire White at email@example.com or 020 7848 6331.