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Patient and Public Involvement

INVOLVEMENT CATEGORIES

Joints | Muscles | Other | Rare Diseases | ALL

Help us to find the best way to measure movement in young boys with Duchenne Muscular Dystrophy

Posted 13 July 2026 · Listed under Rare Diseases

We are looking for young children to take part in our research study – TODDLER: Transforming Outcomes in Duchenne muscular dystrophy (DMD) using DigitaL Endpoints Remotely.

Our aim is to find the best way to measure movement in young boys with DMD. This is important because without good measures we cannot test DMD medicines in younger boys in clinical trials. Giving medicines earlier to younger boys, before muscle damage has happened, could help improve their outcomes and their lives.

Unfortunately, we can’t simply use movement tests designed for older boys because toddlers can struggle with listening, understanding, following instructions or doing their best in a test. We now have a little watch-like wearable device (Syde® device) which boys can wear on their ankles. It records how they move as they go about their normal daily lives. This device is now used in clinical trials in children over four. In this study, our team is aiming to test whether the device can be used in children under four and how it compares to other movement tests.

Who do we need?

We are looking for young boys both with and without DMD under four years old to take part in this study. There are no drugs being tested in this study, but the findings could help test drugs for DMD in the future.

For your child to participate, he must be:

  • A boy with Duchenne muscular dystrophy
  • 1-3 years old
  • Able to walk 10 metres without help

We are also looking for healthy young boys under four years old to take part in this study. For your child to participate, he must be:

  • A boy
  • 1-3 years old
  • Able to walk 10 metres without help

In both cases, appointments would be over a period of about 7 months by phone, online or in your home.

For more details, please email: [email protected]

Spread the word

You can also help by:

  • Sharing the poster through your networks (e.g. email lists, newsletters, social media, community groups or youth organisations)
  • Displaying it in relevant settings if appropriate

Any support with sharing both the DMD and the control posters would be greatly appreciated and will help us ensure a wide range of voices are included in this research.

Thumbnail boys Thumbnail DMD boys

Organisation

STRONG Team, Department of Paediatrics, University of Oxford

Contact

Dr Fiona Moultrie: 01865 618799

This listing will expire Tuesday 13th July 2027 3:48pm

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