Berry, Lisa
Walter, Jerry
Johnson, Jack
Alton, Julia
Powers, Janet
Llòria, Xavier
Koulinska, Irene
McGee, Meghan
Laney, Dawn http://orcid.org/0000-0001-8344-8078
Funding for this research was provided by:
Chiesi USA, Inc. (Chiesi USA, Inc.)
Article History
Received: 9 July 2023
Accepted: 21 February 2024
First Online: 11 April 2024
Declarations
:
: The survey was conducted with the ethical principles that have their origins in the Declaration of Helsinki, in compliance with the approved protocol, Guidance on Good Clinical Practice guidelines, and applicable regulatory requirements. Approval was obtained from Western Institutional Review Board, now known as WIRB-Copernicus Group Institutional Review Board, before enrolling any participants. All participants provided written informed consent.
: Not applicable.
: Lisa Berry: Speaker’s Bureau for Sanofi; and has been a consultant for Chiesi (in the past year), Orphazyme, and Amicus Therapeutics (not in the past year). Jerry Walter: Nothing to disclose. Jack Johnson: Full-time employee of Fabry Support & Information Group. Julia Alton: Nothing to disclose. Janet Powers: Full-time employee of Research Partnership at time of publication. Xavier Llòria: Full-time employee of Chiesi Global Rare Diseases, Parma, Italy. Irene Koulinska and Meghan McGee: Full-time employees of Chiesi USA, Inc., Boston, MA, USA. Dawn Laney: Chair of the North American Fabry Registry Board; cofounder of ThinkGenetic Inc.; has grant funding from Sanofi-Genzyme and Amicus therapeutics; has received honoraria for consulting agreements with Chiesi, Spark Therapeutics, Sanofi-Genzyme, Takeda, Protalix, and Amicus Therapeutics.