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 us directly by sending us 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.
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 Institute of Genetic Medicine, Newcastle University. Hosting is provided by the Friedrich-Baur-Institut, Klinikum der Universität München (University of Munich hospital). Read more about the operator.