Quintiles and the Muscular Dystrophy Association (MDA) have partnered to develop and implement the U.S. Neuromuscular Disease Registry, a patient registry that will help determine effective treatments for muscular dystrophy and related muscle diseases. MDA will use the registry to study the natural history of muscular dystrophy and related muscle diseases, collect information on practice patterns and inform care guidelines.
“We are making remarkable progress in researching new lifesaving treatments and cures for neuromuscular diseases as we move from bench to bedside in clinical trials,” said MDA executive vice president and chief medical and scientific officer Valerie Cwik, M.D. “We are committed to changing and saving the lives of the individuals and families we serve, and the U.S. Neuromuscular Disease Registry brings us one step closer to answering critical clinical and research questions that will improve quality of care.”
“Patient registries are an increasingly important component of real-world evidence development for understanding the cause of disease and identifying effective treatments,” said Richard Gliklich, M.D., president, Quintiles Outcome, the real-world and late phase division of Quintiles. “In designing the U.S. Neuromuscular Disease Registry, our goal is to create a research and collaboration platform that will enable physicians, patients, caregivers and others involved in MDA’s mission to collaborate to advance new treatments for patients.”