New activity study open to recruitment

Published Date
Jenny Sharpe

We would like to tell you about an exciting new opportunity to get involved with activity monitoring research. The purpose of the study is to measure active and resting behaviours in people with progressive muscle weakness, and to evaluate certain measurement tools.

Update 21 May 2019: this study has now stopped recruiting. Thank you to everyone who has enrolled or expressed their interest to take part. We’ll share results from the study as soon as they’re available.

The study is being run by researchers at King’s College London and builds on the results of a previous pilot study. Thank you to everyone who took part in the pilot study – you can read a summary of its preliminary results here.

To participate in the new study, you’ll simply need to live your life as usual and complete some questionnaires as well as wear an activity monitor for certain periods. You won’t need to travel to London or undertake any physical tests. An optional part of the study involves wearing a FitBit, which is yours to keep at the end of the study.

To take part, you must be over 18, and have a diagnosis of a progressive muscle-wasting condition, including but not limited to:

  • Facioscapulohumeral muscular dystrophy
  • Limb girdle muscular dystrophy
  • Miyoshi myopathy
  • Oculopharyngeal muscular dystrophy
  • Becker muscular dystrophy, including manifesting female carriers
  • Duchenne muscular dystrophy, including manifesting female carriers
  • Congenital muscular dystrophies (such as LAMA-2 and Collagen-VI)
  • Inclusion body myositis
  • Myotonic dystrophy
  • Emery Dreifuss muscular dystrophy
  • GNE myopathy
  • Centronuclear myopathies (and other progressive congenital myopathies)


The researchers are recruiting people of all levels of activity: those who are usually completely inactive, those who are very active and levels in between. They are recruiting both ambulant participants and wheelchair-users.

If you are interested in taking part, please email Sarah Roberts-Lewis at or call her office phone on 02078487862 or work mobile 07375945718.

You can also find out more by visiting Sarah’s university research page.

If you have any questions about this news story or any other muscular dystrophy research, please contact the MDUK Research Line on 020 7803 4813 or email

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