The Global Registry for COL6-related Dystrophies
The Global Registry for COL6-related dystrophies is a database for individuals who have been diagnosed with Bethlem Myopathy (BTHLM1), Ullrich Congenital Muscular Dystrophy (UCMD) or an intermediate form of these diseases.
This patient registry will:
|Registry Location||International - available to Australians|
Registry curator – Alison Blain
|Adding New Patients to Registry||
The registry is now accepting registrations in English.
We welcome the registration of:
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.
|Please see the website for more information|