TREAT-NMD and Aetion to collaborate to progress real-world evidence research in rare neuromuscular disease

The three-year deal will see Aetion combine its deep regulatory-grade expertise in real-world evidence study design and analysis with the de-identified patient data collected by the TREAT-NMD Global Registry Network.

Aetion has announced they are working with TREAT-NMD to collaborate on various initiatives aimed at accelerating the generation of real-world evidence (RWE) to support the neuromuscular disease community in the diagnosis, treatment and care of people with these often-devastating conditions. The partnership will leverage the TREAT-NMD Global Registry Network with Aetion’s expertise in RWE methodologies and analysis allow researchers to expedite the development of high-quality, structured patient experience and medical data, as well as generating scientifically robust, regulatory-grade RWE.

TREAT-NMD is the leading global registry network and charity dedicated to advancing innovative therapeutic approaches and establishing best-practice care for individuals with neuromuscular conditions worldwide. The TREAT-NMD Global Registry Network, a collection of patient registries that gather de-identified data from individuals with neuromuscular disorders around the world, aims to improve understanding of rare neuromuscular diseases, facilitate the development of effective therapies, and ensure that patients have access to the most appropriate treatments. The registry network provides a standardized approach to data collection and is designed to enable collaboration between clinicians, researchers, and industry professionals to advance the understanding of neuromuscular conditions and improve patient outcomes.

Commenting on the partnership, David Allison, TREAT-NMD CEO said, “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. We will work in concert to ensure that researchers have access to rare disease data while also leveraging Aetion’s trusted RWE capabilities.”

Aetion, a leading healthcare analytics company, aims to deliver reliable and actionable RWE insights to its clients, enabling them to make informed decisions about healthcare products and services. Nicolas Deltour, VP of Real World Solutions of the company explained. “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.”