By Clinical Informatics News Staff
October 17, 2013 | Quintiles and the Muscular Dystrophy Association (MDA) announced a new partnership last week to develop and implement the U.S. Neuromuscular Disease Registry, a patient registry that will play an important role in determining effective treatments for people with muscular dystrophy and related muscle diseases.
“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 Valerie Cwik, MDA’s EVP and Chief Medical and Scientific Officer in a statement. “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.”
Quintiles was awarded the project based on its depth of experience in post-marketing research, multi-stakeholder strategy, and systems-oriented approach to registry design and development.
“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, President of 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.”
MDA will use the registry to study the natural history of muscular dystrophy and related muscle diseases, collect information on practice patterns, inform care guidelines and improve quality of care for patients. The registry is currently available at 25 medical clinics within the organization’s national network, with plans to expand to their full network of 200 clinics by 2015. It will gather data in a common format across neuromuscular diseases, starting with amyotrophic lateral sclerosis (ALS), Becker muscular dystrophy/Duchene muscular dystrophy (BMD/DMD), and spinal muscular atrophy (SMA), with plans to collect data on three other neuromuscular diseases within the next three years.