Please note that this registry is currently still in development and is expected to be available mid 2018 (in English initially). Please feel free to use the contact form to register your interest and we will let you know when the registry is live.
The Global Registry for COL6-related dystrophies is a database for individuals who have been diagnosed with Bethlem Myopathy, Ullrich Congenital Muscular Dystrophy (UCMD) or an intermediate form of these diseases. The registry team is based at the John Walton Muscular Dystrophy Research Centre at Newcastle University, UK and is part of the TREAT-NMD alliance global network of registries. The registry has been developed in partnership with a number of leading neuromuscular researchers and is funded by the Collagen VI Alliance.
This patient registry will:
- Help identify patients for relevant clinical trials as they become available
- Encourage further research into Collagen 6-related dystrophies
- Provide researchers with specific patient information to support their research
- Assist doctors and other health professionals by providing them with up-to-date information on managing Collagen 6- related dystrophies, to help them deliver better standards of care for their patients
We welcome the registration of:
✓ All patients, with a diagnosis of a COL6-related dystrophy (Bethlem Myopathy, Ullrich Congenital Muscular Dystrophy or Intermediate form) , which has been confirmed via genetic testing or muscle biopsy.
If you have not had a confirmed diagnosis, but you would like to receive updates and newsletters from the registry, please email Alison.Blain@ncl.ac.uk and ask to be added to our general mailing list.
Our aim is to make our registry the most comprehensive there is for this specific condition, to give us an insight into the numbers of people affected and to help us understand more about the natural history of the disease.