Our Steering Committee

The MTM and CNM Patient Registry Steering Committee comprises a mixture of clinical and research expertise, as well as representation from patients and patient organisations. The committee is chaired by Professor Hanns Lochmüller, and collectively they are responsible for:

  • Overseeing and approving data requests and trial recruitment enquiries
  • Ensuring appropriate quality control and validation of data
  • Assessing and approving contracts and confidentiality agreements
  • Ensuring the Registry is well governed

This is intended to be a streamlined and rapid procedure in order to avoid delays to approvals. If you have any questions about the steering committee please contact the Registry Curator Jo Bullivant.

 

  • Carsten Bönnemann

    Senior Investigator and Chief of the Neuromuscular and Neurogenetic Disorders of Childhood Section – National Institute of Neurological Disorders and Stroke (NINDS)
    United States of America


  • Ana Buj Bello

    Senior Scientist in Neuromuscular Disorders and Gene Therapy – INSERM, Genethon
    France


  • Aart den Hollander

    Patient Representative – ZNM – Zusammen Stark! e.V.
    Netherlands


  • James Dowling

    Staff Clinician in the Division of Neurology and Senior Scientist in Genetics and Genome Biology – Hospital for Sick Children, Toronto
    Canada


  • Heinz Jungbluth

    Consultant in Paediatric Neurology and Senior Lecturer – Guy’s and St Thomas’ NHS Trust and King’s College London
    United Kingdom


  • Anne Lennox

    Chief Executive and Parent Trustee – Myotubular Trust
    United Kingdom


  • Hanns Lochmüller (Chair)

    Professor of Experimental Myology and Consultant in Neuromuscular Genetics – John Walton Muscular Dystrophy Research Centre, Newcastle University, UK
    United Kingdom


  • Melanie Spring

    Communications and Education Coordinator – Myotubular Trust
    United Kingdom