Document is current
Any future updates will be listed below
-
Authors
Sigurdardottir, Solrun http://orcid.org/0000-0002-7194-3570
Bjerkely, Birgitte
Jenssen, Trond G.
Mathisen, Per
von der Lippe, Charlotte
Ørstavik, Kristin
Heimdal, Ketil
Dahle, Dag Olav
Weedon-Fekjær, Mina Susanne
Solberg, Olga
Pihlstrøm, Hege K.
-
Funding
Funding for this research was provided by:
The National Advisory Unit on Rare Disorders in Norway
- License Information
-
More Information
Article History
Received: 12 March 2021
Accepted: 30 September 2021
First Online: 12 October 2021
Declarations
:
: All protocols and methods were approved by the Norwegian Regional Committee for Medical Research Ethics in southeastern Norway (REC Number 31513) and the Personal Data Officer at the Oslo University Hospital (Number 20/01134). The Ethical Committee gave permission to include data from seven deceased patients. Participants received detailed information about the study in March 2020. Questionnaires were mailed out and written informed consent was obtained from all participants. FD-related information was collected from medical files after consent had been received.
: Participants were informed that the results may be published in a peer-reviewed medical journal (no individual data).
: Hege Kampen Pihlstrøm has received honoraries for work as a consultant for Amicus Therapeutics. Trond G. Jenssen and Ketil Heimdal have received honoraries for work as a consultant for Amicus Therapeutics and Sanofi Genzyme, and Charlotte von der Lippe for consultant work for Takeda and Sanofi Genzyme.
