Ten years of the Hunter Outcome Survey (HOS): insights, achievements, and lessons learned from a global patient registry
Muenzer, Joseph, Jones, Simon A, Tylki-Szymańska, Anna, Harmatz, Paul, Mendelsohn, Nancy J, Guffon, Nathalie, Giugliani, Roberto, Burton, Barbara K, Scarpa, Maurizio, Beck, Michael, Jangelind, Yvonne, Hernberg-Stahl, Elizabeth, Larsen, Maria Paabøl, Pulles, Tom, Whiteman, David A H
Published in Orphanet journal of rare diseases (02.05.2017)
Published in Orphanet journal of rare diseases (02.05.2017)
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Journal Article
Insights into the management of patients with MPS II: Key findings following 10 years of the Hunter Outcome Survey (HOS)
Whiteman, David, Giugliani, Roberto, Scarpa, Maurizio, Tylki-Szymańska, Anna, Beck, Michael, Larsen, Maria Paabøl, Morin, Isabelle, Muenzer, Joseph
Published in Molecular genetics and metabolism (01.02.2016)
Published in Molecular genetics and metabolism (01.02.2016)
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Journal Article
Insights into the management of patients with MPS II: Key findings following 10years of the Hunter Outcome Survey (HOS)
Whiteman, David, Giugliani, Roberto, Scarpa, Maurizio, Tylki-Szymańska, Anna, Beck, Michael, Larsen, Maria Paabøl, Morin, Isabelle, Muenzer, Joseph
Published in Molecular genetics and metabolism (01.02.2016)
Published in Molecular genetics and metabolism (01.02.2016)
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Journal Article
Lessons learned in updating a large global registry to achieve long-term improvements in data completeness and quality: the Hunter Outcome Survey moving towards system enhancement (HOSMOSE) project
Larsen, Maria Paabøl, Gerin, Remi, Lynch, Marcella, Morin, Isabelle, Pulles, Tom, Surrel, Pauline
Published in Molecular genetics and metabolism (01.02.2014)
Published in Molecular genetics and metabolism (01.02.2014)
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Journal Article