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AdminFeb 22, 20232 min read

TREAT-NMD, a Leading Global NeuroMuscular Diseases Registry Network, and Aetion Announce Partnership on Real-World Evidence

NEW YORK and Newcastle, February 22, 2023/ —TREAT-NMD Services Ltd, the business arm of TREAT-NMD Alliance Ltd, a charity focused on neuromuscular disorders, and Aetion, Inc., the global leader in real-world evidence (RWE) technology and analytics, today announced a three-year global partnership that will see the organizations working on a number of projects to expedite the development of treatment solutions for people with rare neuromuscular diseases - e.g., spinal muscular atrophy (SMA), Duchenne muscular dystrophy, Charcot, and Becker muscular dystrophy. Accessing registries of high quality and structured patient experience and medical data - and the subsequent generation of scientifically rigorous, regulatory-grade RWE - present a unique set of challenges to researchers in the field of rare neuromuscular diseases.  These projects will combine the expertise of TREAT-NMD Global Registry Network that collects de-identified data from patients across the world with Aetion’s regulatory-grade expertise in RWE study design and analysis.   “TREAT-NMD is pleased to partner with Aetion on a range of projects to generate the scientific evidence necessary to develop and deliver novel treatment solutions to people with neuromuscular diseases around the world,” said David Allison, TREAT-NMD CEO. “We will work in concert to ensure that researchers have access to rare disease data while also leveraging Aetion’s trusted RWE capabilities.” As globally-recognized partners, TREAT-NMD and Aetion strive to drive impact by speeding the delivery of rapid and robust RWE for the highly challenging area of rare neuromuscular disease. This collaboration, in turn, will support solutions for biopharmaceutical researchers by enabling easier access to critical rare disease data sources and scientifically-validated study design guided by first-in-class RWE methodologies.    “Aetion is inspired by TREAT-NMD’s mission to operate a collaborative, inclusive global network and data infrastructure to advance the diagnosis, treatment, and care for neuromuscular patients globally,” said Nicolas Deltour, VP of Real World Solutions at Aetion. “The richness of the TREAT-NMD registry network combined with Aetion's RWE analytics technology and expertise will together play a pivotal role in supporting pharmaceutical companies in advancing treatments and better outcomes for neuromuscular patients in Europe and around the world."  About TREAT-NMD TREAT-NMD is a network for the neuromuscular field that provides an organizational infrastructure to support each stage of the drug development process to ensure that the most promising new therapies reach patients as quickly as possible. Since its launch in January 2007, the network’s focus has been on the development of tools that industry, clinicians and scientists need to bring novel therapeutic approaches through preclinical development and into the clinic, and on establishing best-practice care for neuromuscular patients worldwide. Learn more at or follow us @treat_nmd. About Aetion Aetion is a healthcare analytics company that delivers real-world evidence for the manufacturers, purchasers, and regulators of medical treatments and technologies. The Aetion Evidence Platform® analyzes data from the real world to produce transparent, rapid, and scientifically validated answers on safety, effectiveness, and value. Founded by Harvard Medical School faculty members with decades of experience in epidemiology and health outcomes research, Aetion informs healthcare’s most critical decisions—what works best, for whom, and when—to guide product development, commercialization, and payment innovation. Learn more at and follow us at @aetioninc . Aetion Media Contact Kerry Sinclair   Spectrum Science Communications on behalf of Aetion