- not yet recruiting
The Prevalence of RYR1-related Disease
This study aims to find out how many people in the UK and Netherlands have health problems linked to the RYR1 gene. These problems can range from muscle weakness to a serious reaction to anaesthesia. Understanding this will help improve care and research for these conditions.
United Kingdom - recruiting
Myotubular and Centronuclear Myopathy Patient Registry
This registry is for people in the UK with myotubular or centronuclear myopathy. It aims to gather important health information to help researchers learn more, identify people for studies, and improve care. You can register online.
United Kingdom