Received: 14 September 2020
Accepted: 9 December 2020
First Online: 6 January 2021
Ethics approval and consent to participate
: The questionnaire did not collect personal data. Ethical consent was not sought as it was clarified at the beginning of the questionnaire that the primary purpose of the survey was to gain opinion about the role and benefit of CE centres to support patients with PKU. It was also stated that the data would be saved in an anonymized form. Adults with PKU and caregivers gave their consent by their voluntary completion and submission of the online questionnaire.
: Not applicable.
: A.M.J. van Wegberg has received a research grant from Nutricia, honoraria from Biomarin as speaker, and travel support from Nutricia and Vitaflo. A. MacDonald has been a member of the European Nutritionist Expert Panel Biomarin, Sapropterin Advisory Board Biomarin, the advisory board ELEMENT Danone-Nutricia, the advisory board for Arla and Applied Pharma Research, and received research funding and honoraria from Nutricia, Vitaflo International and Merck Serono. F. Trefz has received grants from Vitaflo Germany and honoraria as a speaker from Merck-Serono S.A. F.J. van Spronsen has been a member of scientific advisory boards for defects in amino acid metabolism of APR, Arla Food International, BioMarin, Eurocept Int, Lucana, Moderna TX, Nutricia, Rivium and SoBi, has received research grants from Alexion, Biomarin, Codexis, Nutricia, SoBi, and Vitaflo, has received grants from patient organizations ESPKU, Metakids, NPKUA, Stofwisselkracht, Stichting PKU research and Tyrosinemia Foundation, and has received honoraria as consultant and speaker from APR, Biomarin, MendeliKABS, SoBi, and Nutricia. D. Abeln, T. Hagedorn and E. Lange declare that they have no conflict of interest.