Charlotte Lilien

DMD-Hub Advanced Physiotherapist Neuromuscular Service

Since my Masters degree in Physiotherapy obtained in June 2013, I started to work in September 2013 as Physiotherapist at the Institute of Myology; a centre specialized in care and research in adult and paediatric neuromuscular diseases. Over the course of my career, I have participated in the creation of the I-Motion Institute, and was the Physiotherapy Coordinator for an international natural history study in Myotubular Myopathy. 

I am also a part of the ActiMyo team, composed of engineers and clinicians. This innovative device uses magneto-inertial sensors to permit movement, gait and activity analysis in uncontrolled environments, and one of its application has been qualified by the European Medical Agency as a clinical endpoint in clinical trials in Duchenne muscular dystrophy. My role is to give a physiotherapy point of view and input, and to train the physiotherapists conducting the clinical trials. Since 2018, I’m a Master trainer and consultant for scales and outcome measures used in neuromuscular clinical trials and clinics.

After more than six years of collaboration with Laurent Servais in Paris, I decided to join his team within the MDUK Oxford Neuromuscular Centre, a partnership between the University of Oxford and Muscular Dystrophy UK to drive the development of new therapies and increase national clinical trial capacity in neuromuscular diseases. .  


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