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

Affiliations

• ¹ Department of Neuropediatrics and Muscle Disorders, Medical Center - University ofFreiburg, Faculty of Medicine, Freiburg, Germany.
• ² Data Science - Personalized HealthCare, F. Hoffmann-La Roche, Basel, Switzerland.
• ³ Biogen, Cambridge, MA, USA.
• ⁴ Department of Pediatrics, Division of Neurology, Nemours Children's Hospital, Orlando, USA.
• ⁵ Department of Pediatrics and Child Neurology, University Hospitals Leuven, Leuven, Belgium.
• ⁶ Fundación Atrofia Muscular Espinal, FundAME, Madrid, Spain.
• ⁷ SMA Europe, Chipping Campden, UK.
• ⁸ Children withSpinal Muscular Atropy, Charitable Foundation, Kharkiv, Ukraine.
• ⁹ University College LondonGreat Ormond Institute of Child Health, London, UK; and NIHR Great Ormond Street Hospital Biomedical Research Centre, London UK.
• ¹⁰ AFM-Telethon, Evry, Ile-de-France, France.
• ¹¹ Deutsche Gesellschaft für Muskelkranke e.V., Freiburg, Germany.
• ¹² Health Connect Partners, Brussels, Belgium.