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EAN 2023 | The Adult SMA REACH project: a data collection study

Robert Muni-Lofra, PhD, University of Newcastle, Newcastle, UK, discusses the Adult spinal muscular atrophy (SMA) REACH project. Traditionally, there has been a greater focus on the pediatric population in the field of SMA. The advent of disease-modifying therapies highlighted an urgent need to establish stronger clinical networks and data collection to monitor and gain a better understanding of the impact of new drugs on the natural history of the disease. Adult SMA REACH is a data collection study aiming to better understand the impact of standards of care and new treatments on the natural history of SMA. The network is focused on improving the care of the adult population with SMA, which has proved challenging since most UK sites caring for adult SMA patients have started with elementary settings. Additionally, a recent study has shown that adult patients’ access to care is much more limited than pediatric patients. Therefore, the network has proved to be instrumental in coordinating all care sites and supporting the implementation of standards of care. This interview took place at the European Academy of Neurology (EAN) 2023 Congress in Budapest, Hungary.

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