Global Registry for COL6-related dystrophies

<p><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 <a href="https://newcastle-muscle.org/" target="_blank"><strong>John Walton Muscular Dystrophy Research Centre</strong></a> at  Newcastle University, UK and is part of the <a href="https://treat-nmd.org/" target="_blank"><strong>TREAT-NMD</strong></a> 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. </p> <p><br></p> <p>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.</p>