Global Registry for COL6-related dystrophies

<strong>The Global Registry for COL6-related dystrophies</strong> is a database for individuals who have been diagnosed with <strong>Bethlem Myopathy, Ullrich Congenital Muscular Dystrophy (UCMD)</strong> or an <strong>intermediate form</strong> of these diseases. The registry team is based at the <strong>John Walton Muscular Dystrophy Research Centre</strong> at Newcastle University, UK and is part of the <strong>TREAT-NMD</strong> 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. <br> 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.