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Article History

Received: 11 November 2018

Accepted: 20 June 2019

First Online: 19 July 2019

Ethics approval and consent to participate

: IOS is conducted in multiple sites across 13 countries in accordance with the Declaration of Helsinki and the International Conference on Harmonisation Good Clinical Practice guidelines. All sites obtained approval from local ethics committees and/or health authorities (where applicable), and all patients provided written informed consent before the initiation of data collection. Consent from parents or a legal representative was obtained for patients who were younger than 18 years of age at the time of enrollment.

: Not applicable.

: AB has received research grant support and/or speaker/consulting fees from CSL Behring and Shire*, and participated in a clinical trial for BioCryst and Jerini AG. She is an advisor for the HAE Scandinavian Patient Organization. TC has received speaker fees from CSL Behring, Novartis, and Shire,* consulting fees from BioCryst, CSL Behring, Novartis, and Shire,* funding for travel/meeting attendance from CSL Behring, Novartis, and Shire,* and has participated in clinical trials/registries for BioCryst, CSL Behring, Novartis, Pharming, and Shire.* She is a researcher from the IdiPAZ program for promoting research activities. ASG has been a speaker/consultant for BioCryst, CSL Behring, and Shire.* HJL has received research grant support and/or speaker/consulting fees from Adverum, BioCryst, CSL Behring, Shire,* and Sobi. LB has received honoraria from BioCryst, CSL Behring, Novartis, Pharming, and Shire* and her institute has received research funding from CSL Behring, GlaxoSmithKline, Novartis, Roche, and Shire.* WA has acted as a medical advisor and speaker for BioCryst, CSL Behring, Pharming, and Shire* and has received funding to attend conferences/educational events, and donations to his departmental fund from and participated in clinical trials for Shire.* AZ has received speaker fees from CSL Behring, Shire,* and Sobi; consulting fees from CSL Behring and Shire* and has acted on the medical/advisory boards for CSL Behring and Shire.* JB and IA are full-time employees of Shire,* Zug, Switzerland. MM has received research grant support and/or speaker/consulting fees from BioCryst, CSL Behring, and Shire*.*A Takeda company.