Quintiles is expanding its interest in real-world outcomes research through a new partnership to develop and implement the US Neuromuscular Disease Registry.
The Muscular Dystrophy Association (MDA) awarded Quintiles the project based on the latter’s depth of experience in post-marketing research, multi-stakeholder strategy and systems-oriented approach to registry design and development, explained the US-based provider of biopharmaceutical development and commercial outsourcing services.
The US Neuromuscular Disease Registry is currently available at 25 medical clinics within MDA’s national network, with plans to expand availability to the association’s full network of 200 clinics by 2015.
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 the quality of care for patients.
It will gather data in a common format across neuromuscular diseases, starting with amyotrophic lateral sclerosis, Becker muscular dystrophy/Duchene muscular dystrophy, and spinal muscular atrophy. The plan is to collect data on three other neuromuscular diseases within the next three years.
Research and collaboration
“In designing the US 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,” commented Dr Richard Gliklich, president of Quintiles Outcome, the company’s real-world and late-phase division.
As Gliklich pointed out, patient registries are an increasingly important component of real-world evidence development aimed at understanding the causes of disease and identifying effective treatments.
“We are making remarkable progress in researching new life-saving treatments and cures for neuromuscular diseases as we move from bench to bedside in clinical trials,” said Dr Valerie Cwik, executive vice president and chief medical/scientific officer at MDA.
The US Neuromuscular Disease Registry “brings us one step closer to answering critical clinical and research questions that will improve quality of care”, Cwik added.