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Charlotte Lilien

Paediatric Physiotherapist

Since my Master in Physiotherapy obtained in June 2013, I started to work in September 2013 as Physiotherapist at the Institute of Myology; a center specialized in care and research in adult and paediatric neuromuscular diseases.

In 2015, I participated at the creation of the I-Motion institute; a center specialized in care and research in paediatric neuromuscular diseases. As physiotherapist, I had to manage the assessments in trials followed by the establishment of physiotherapy consultations by advising the most appropriated care.

My four languages (French, German, English and basics of Dutch) made me the Physiotherapy coordinator and “flying-physio” for an international natural history study in Myotubular Myopathy. The aim was to conduct the physiotherapy assessments at the patient’s home or center. Beside the human aspect, my extensive travel experience helped me to grow my knowledge about care conducted in the different countries and to exchange with specialists.

As expert in outcome measure development, I’m 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 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 based in Oxford who is in charge to create the MDUK center, which will be a new neuromuscular translational center founded by Oxford University and DMD HUB.