If you have any other questions or would like more information about the registry then you can contact us directly.
If the question you are contacting us about concerns a particular participant, please give us the full name and date of birth of the participant.
The committee is responsible for reviewing all requests for data from the registry.
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).