Högler, Wolfgang
Langman, Craig
Gomes da Silva, Hugo
Fang, Shona
Linglart, Agnès
Ozono, Keiichi
Petryk, Anna
Rockman-Greenberg, Cheryl
Seefried, Lothar
Kishnani, Priya S.
Funding for this research was provided by:
Alexion Pharmaceuticals, Inc.
Article History
Received: 14 June 2018
Accepted: 16 January 2019
First Online: 14 February 2019
Authors’ information
: Not applicable.
: The study protocol was approved by the institutional review board (or local equivalent) of participating study sites and is being conducted in accordance with International Conference on Harmonisation Good Clinical Practice Guidelines and the Declaration of Helsinki. All patients and/or their parent/legal guardians provided written informed consent and approval to release medical records before participation.
: Not applicable.
: All authors are members of the Scientific Advisory Board responsible for oversight of the HPP Registry.CL, WH, AL, KO, and CRG are clinical study investigators and have received consultancy fees, and/or institutional research funding, and/or grant support, and/or travel support from Alexion Pharmaceuticals, Inc. At the time of the study, WH was affiliated with University of Birmingham, Birmingham, UK.LS is a clinical study investigator and has received consultancy fees and research grants to his institution from Alexion Pharmaceuticals, Inc.SF and AP are employees of and may own stock/options in Alexion Pharmaceuticals, Inc., which sponsored the study.HG was an employee of and may own stock/options in Alexion Pharmaceuticals, Inc., which sponsored the study.PSK is a clinical study investigator and has received consultancy fees and travel support from Alexion Pharmaceuticals, Inc. for consulting and participation on advisory boards.
: Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.