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 Global Registry Network. 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 (collagen6registry@newcastle.ac.uk).
Information for doctors can also be found here.
Register your interest in joining the registry
Website:
Email Address:
Secondary Email Address:
Contact Number:
+44 141 2418605
Address:
John Walton Muscular Dystrophy Research Centre
Institute Of Genetic Medicine
Central Parkway
Newcastle upon Tyne
United Kingdom
Language(s) spoken
Primary language
- English
Registry type
- Adult
- Paediatric
Geographical coverage
- International
TGDOC Membership
- TGDOC Affiliate Member Registry for LGMD
Data entry
- Clinician Entered
- Patient Entered