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. Collectively, the committee 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 (Co-Chair)

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

  • Aart den Hollander

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

  • James Dowling (Co-Chair)

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

  • 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

  • Chiara Marini-Bettolo (Principal Investigator)

    Clinical Lead, Consultant Neurologist, and Clinical Lead of the Highly Specialised Service for Limb-girdle muscular dystrophies – John Walton Muscular Dystrophy Research Centre and Newcastle Hospitals NHS Foundation Trust
    United Kingdom