Four patient registries, run by the team at the John Walton Muscular Dystrophy Research Centre in Newcastle, have shared their latest newsletters, giving updates on the registries, research, drug development and upcoming events. You can read them here:
- UK FSHD registry newsletter (facioscapulohumeral muscular dystrophy)
- UK DM registry newsletter (myotonic dystrophy)
- Global Col6 registry newsletter (Collagen 6-related dystrophies)
- International GNE-myopathy registry newsletter (GNE-myopathy)
Muscular Dystrophy part funds the UK FSHD and DM registries and the Global registry for Collagen 6-related dystrophies.
What is a registry?
Registries are databases that contain information about individuals affected by a particular condition. With permission, researchers and companies can view this information and recruit eligible patients for trials. The information can also help clinicians to understand more about the condition and develop care standards. Find out more in our registries FAQ.
In addition to their important roles in clinical trials, registries can be useful tools to find out about current research. There are currently many potential therapies for FSHD and DM at different stages of development. These range from preclinical research in the laboratory to potential treatments in clinical trials. Find out more in the registries drug development pipelines: