If you have a question that we have not answered to your satisfaction on our information pages or if you want to give us any feedback, you can contact the Registry Curator, Helen Walker directly by sending an e-mail to the following address:
If the question you are contacting us about concerns a particular patient, please give us the full name and date of birth of the patient.
You can also reach the registry team by phone on 0191 241 8640.
The steering committee is responsible for reviewing all requests for data from the database. It is comprised of several neuromuscular specialists. Read more about the steering committee.
This registry is operated by the John Walton Muscular Dystrophy Research Centre, Newcastle University.