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, Ullrich Congenital Muscular Dystrophy (UCMD) or an intermediate form of these diseases. The registry team is based at at Newcastle University, UK and is part of the TREAT-NMD alliance global network of registries. The registry collects information from patients and their doctors. More information about the registry and how to join can be found at www.collagen6.org. If you are a clinician who would like to become affiliated with the registry, please contact the registry curator (firstname.lastname@example.org).
Contact Number:0191 241 8605
John Walton Muscular Dystrophy Research Centre
Institute Of Genetic Medicine
Newcastle upon Tyne