Muscular Dystrophy Association to Expand Registry to Cover Seven Diseases

Ana de Barros, PhD avatar

by Ana de Barros, PhD |

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The Muscular Dystrophy Association (MDA) has asked the medical data services company IQVIA to expand its disease registry into a hub of information on seven neuromuscular conditions, including spinal muscular dystrophy (SMA).

The repository will include disease information from care providers, genetics data, and patient-reported information.

In addition to SMA, the MOVR (Neuromuscular Observational Research) Data Hub will start with information on Duchenne muscular dystrophy, Becker muscular dystrophy, and amyotrophic lateral sclerosis. Later this year, it will add three other diseases.

“MDA is excited to partner with IQVIA as we ramp up our efforts to advance research and transform care to improve outcomes and bring innovative and life-changing solutions to individuals living with neuromuscular disease. Within the next year, MOVR will be the most comprehensive neuromuscular disease resource in the nation for patient and genetic data,” Lynn O’Connor Vos, the president and chief executive officer of MDA, said in a press release. “We are rapidly approaching the day when people will be able to benefit from personalized medicine, and MDA and IQVIA insights and data will provide the foundation and support for the advanced research it will take to get us there for so many of these patients.”

This collaboration’s goal is to improve scientists and healthcare providers’ ability to develop precision medicine treatments for these diseases, and improve care options. The platform has the potential to broaden care opportunities for all seven neuromuscular diseases.

MOVR  will allow doctors and patients to use new methods to deliver information. This includes letting patients report outcomes and other information by smartphone. The  information can be integrated with data obtained during office visits or by telemedicine exchanges.

“A central Data Hub that allows the collection of clinical information, patient-reported outcome data, and allows for the integration of that data with genomic and other data types will accelerate improvements in drug development and clinical care,” said Brian Kelly, IQVIA’s president of payer and buyer solutions.

The initiative will focus on two main areas: care and drug development. Some of the specific information to be covered include care quality benchmarking, the safety and effectiveness of new therapies, the natural history of neuromuscular diseases, and correlations between the genetic makeup of cells and disease characteristics.

“MOVR will help reduce barriers to therapy development by serving as a resource for patient recruitment to clinical trials and creating a global unique identifier (GUID) for patients matching longitudinal data to other data repositories,” said Grace Pavlath, the senior vice president of MDA. “MDA is eager to implement some of the more promising uses of the new system, including the ability of MOVR to capture clinical data for patients using newly approved drugs, as well as for pre-symptomatic infants identified through newborn screening programs.”

MDA started the pilot registry upon which MOVR is based in 2013. The registry first included diagnostic tests, disease characteristics, treatments, and outcomes. Since its establishment, it has been used by several neuromuscular disease specialists and researchers.