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Hanns Lochmüllera,∗, David Evansb, Wildon Farwellc, Richard Finkeld, Nathalie Goemanse, Mencia de Lemusf,l, Vitaliy Matyushenkog,l, Francesco Muntonih, Marie-Christine Ouilladei,l, Inge Schwersenzj,l and Petra Wilsonk aDepartment of Neuropediatrics and Muscle Disorders, Medical Center – University of Freiburg, Faculty of Medicine, Freiburg, Germany bData Science – Personalized Health Care, F. Hoffmann-La Roche, Basel, Switzerland cBiogen, Cambridge, MA, USA dDepartment of Pediatrics, Division of Neurology, Nemours Children’s Hospital, Orlando, USA eDepartment of Pediatrics and Child Neurology, University Hospitals Leuven, Leuven, Belgium f Fundación Atrofia Muscular Espinal, FundAME, Madrid, Spain gChildren with Spinal Muscular Atropy, Charitable Foundation, Kharkiv, Ukraine hUniversity College London Great Ormond Institute of Child Health, London, UK; and NIHR Great Ormond Street Hospital Biomedical Research Centre, London UK iAFM-Telethon, Evry, Ile-de-France, France jDeutsche Gesellschaft für Muskelkranke e.V., Freiburg, Germany kHealth Connect Partners, Brussels, Belgium lSMA Europe, Chipping Campden, UK

Position Statement: Sharing of Clinical Research Data in Spinal Muscular Atrophy to Accelerate Research and Improve Outcomes for Patients