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Global Registry for COL6-related dystrophies
datasetposted on 2023-02-27, 11:45 authored by Sam McDonaldSam McDonald
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.
Participants can self-register at collagen6.org and provide health and quality-of-life related data. They may also nominate their treating doctor to provide additional clinical data.