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.
United States of America