Fighting muscle diseases is a herculean task, and the Muscular Dystrophy Association has picked a big partner to help advance treatments.

The MDA struck an agreement with Quintiles, the world’s largest life science services firm, to help the organization build a registry through which it hopes to advance the fight against muscular dystrophy and other diseases. The registry is now available at 24 clinics that are part of the MDA network. The association plans to make it available at all 200 participating clinics by 2015.

According to the MDA and Quintiles, the project could “play an important role in determining effective treatments.”

The project was announced Tuesday.

“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 Chief Medical and Scientific Officer Valerie Cwik, MD, in announcing the agreement. “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.”

The contract for the project covers three years.

The MDA said it chose Quintiles for the contract “based on its depth of experience in post-marketing research, multistakeholder strategy, and systems-oriented approach to registry design and development.”

MDA is a client of Quintiles. A Quintiles spokesperson declined to disclose the financial terms of the agreement, other than to say “services for this project are not being donated.”

“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, MD, president of Quintiles Outcome, a 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.”

The registry will include:

  • Natural history of muscular dystrophy and related muscle diseases
  • Information on practice patterns
  • Care guidelines

The aim is to “improve quality of care for patients.”

Targeted diseases include:

  • Amyotrophic lateral sclerosis (ALS)
  • Becker muscular dystrophy/Duchene muscular dystrophy (BMD/DMD)
  • Spinal muscular atrophy (SMA)

Three additional diseases will be incorporated over the next three years. 

MDA clinics provide health care specialists from a variety of disciplines. These can include:

  • cardiologists
  • dieticians
  • genetic counselors
  • MDA representative
  • neurologists
  • nurse case managers
  • orthopedists
  • physiatrists
  • physical and occupational therapists
  • psychologists
  • pulmonologists
  • social workers
  • speech/language pathologists

Quintiles operates internationally and has more than 27,000 employees. Its global headquarters is located in Durham.

[QUINTILES ARCHIVE: Check out more than a decade of Quintiles stories as reported in WRALTechWire.]