Ten years of the Hunter Outcome Survey (HOS): insights, achievements, and lessons learned from a global patient registry.

Address: Department of Pediatrics, University of North Carolina at Chapel Hill, Chapel Hill, NC, USA.; Willink Unit, Manchester Centre for Genomic Medicine, St Mary's Hospital, Manchester and Academic Health Sciences Centre, Central Manchester University Hospitals NHS Foundation Trust, Manchester, UK.; Department of Pediatric Nutrition and Metabolic Diseases, The Children's Memorial Health Institute, Warsaw, Poland.; UCSF Benioff Children's Hospital Oakland, Oakland, CA, USA.; Genomic Medicine Program, Children's Hospitals and Clinics of Minnesota, Minneapolis, MN, USA.; Department of Pediatrics, Division of Genetics, University of Minnesota, Minneapolis, MN, USA.; Centre de Référence des Maladies Héréditaires du Métabolisme, Hôpital Femme Mère Enfant, Bron, France.; Department of Genetics/UFRGS and INAGEMP, Medical Genetics Service/HCPA, Porto Alegre, Brazil.; Division of Genetics, Birth Defects and Metabolism, Ann & Robert H. Lurie Children's Hospital of Chicago, Northwestern University, Chicago, IL, USA.; Rare Disease Centre, Helios Dr Horst Schmidt Clinic, Wiesbaden, Germany.; Department of Women's and Children's Health, University of Padova, Padova, Italy.; Department of Pediatrics, University Medical Center, Johannes Gutenberg University, Mainz, Germany.; Jangelind Consulting AB, Stockholm, Sweden.; Late Phase Solutions Europe AB, Täby, Sweden.; Shire Human Genetic Therapies, Inc., 300 Shire Way HA100-310, Lexington, MA, 02421, USA.; Present address: Shionogi, Inc., Florham Park, NJ, USA.; Shire, Zug, Switzerland.; Present address: Ultragenyx Pharmaceutical, Inc., Basel, Switzerland.; Shire Human Genetic Therapies, Inc., 300 Shire Way HA100-310, Lexington, MA, 02421, USA. [email protected].