Charlotte Lilien

I am a consultant research physiotherapist who began my career in 2013 at the Institute of Myology in Paris, a leading centre for clinical research in neuromuscular disorders. I later contributed to the creation of the I-Motion Institute, focusing on paediatric care  and clinical research.

As an expert in outcome measure development, I have contributed to the ActiMyo and Syde devices, supporting the development of innovative technologies for real-world movement analysis, including an endpoint recognised by the European Medicines Agency for use in Duchenne muscular dystrophy clinical trials. Since 2018, I have been a Master Trainer and consultant for outcome measures in neuromuscular clinical trials.

I relocated to Oxford in January 2020, where I have developed into an independent clinical researcher and leader within the neuromuscular field. I have led and contributed to multiple international multicentre studies and published in leading journals. My research spans a range of rare neuromuscular and neurological conditions, including myotubular myopathy, Duchenne muscular dystrophy, spinal muscular atrophy, nemaline myopathy, as well as Angelman syndrome and CTNNB1-related disorders. I actively contribute to shaping international standards of care through involvement in European guidelines, advisory boards, and global training initiatives.

I currently lead several research programmes as Principal Investigator, including the ACE-SMA, Virtual Reality, and Active NBS projects, securing substantial competitive funding from industry and charitable organisations. My work focuses on advancing rehabilitation research and improving outcomes in rare neuromuscular diseases through innovative, collaborative approaches.

Alongside my research, I completed a PhD by published works at Oxford Brookes University in 2025, strengthening my academic expertise in longitudinal disease tracking in Duchenne muscular dystrophy and spinal muscular atrophy.

In parallel, I have established and lead a growing physiotherapy team, mentoring Band 6 and Band 5 clinical researchers while integrating research into clinical practice. I am committed to capacity building, international collaboration, and developing future leaders in physiotherapy research.