Category Archives: Current Trials and Studies

Merosin Deficient (MDC1A) Clinical Study

Dr. Jim Collins at Cincinnati Children’s Hospital Medical Center (CCHMC) will launch a 1 year trial, Jan/2010- Dec/2010, to identify biomarkers in Merosin Deficient CMD (MDC1A). Dr. Collins and Dr. Carsten Bonnemann at the Children’s Hospital of Philadelphia (CHOP) will enroll infants and children, 0-10 years, with Merosin Deficient CMD.
Contact: Shengyong Hu or Paula Morehart (Division of Neurology, [...]

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BIO-NMD Study: Biomarkers for Collagen VI Myopathies and Duchenne muscular dystrophy

The BIO-NMD consortium, led by the University of Ferrara’s Dra. Alessandra Ferlini will focus current funding on identifying biomarkers in the Collagen VI myopathies and Duchenne muscular dystrophy. The 3 year project is currently funded through Dec 2012. The study will first evaluate muscle tissue biospecimens available through the EuroBioBank, and then move to evaluate [...]

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CHOP CoPS Ullrich and Bethlem Study

The CHOP CoPS is a comprehensive study of the clinical manifestations of collagen VI deficiency (Ullrich and Bethlem).  The purpose of this study is to: characterize collagen VI deficiency disease, follow the natural history in both subtypes and understand the impact of collagen VI on the affected person and family.  Participating in this study directly [...]

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  • Congenital Muscular Dystrophy

    A group of diseases causing muscle weakness at birth. Several defined genetic mutations cause muscles to break down faster than they can repair or grow. A child with CMD may have various neurological or physical impairments. Some children never gain the ability to walk, while others lose the ability as they grow older. Learn more...
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