Funding for this research was provided by:
Swedish Orphan Biovitrum
Received: 16 September 2019
Accepted: 22 November 2019
First Online: 4 December 2019
Ethics approval and consent to participate
: The study was approved by the Medical Ethical Committees of the participating centers. All patients and/or parents gave informed consent to participate in this study.
: Not applicable.
: R. Jahja has received honoraria as a speaker and consultant for Merck Serono.A. Daly has received grants/honoraria for research, teaching and courses from Nutricia Ltd., Vitaflo Int., First play dietary foods and Mavalia.A. MacDonald has received research funding and honoraria from Nutricia, Vitaflo, Biomarin and Lactalis International. She is a member of the following advisory boards: European Nutritionist Expert Panel (Biomarin), Sapropterin Advisory Board (Biomarin), ELEMENT (Danone-Nutricia), and Arla and Applied Pharma Research.P.J. McKiernan and A.A. Morris have contributed to advisory boards for SOBI.P. Gissen has previously performed consultancy work for SOBI but not in the past three years.C. Timmer has previously followed training that was (partly) payed for by Vitaflo and Nutricia, but not in the past three years.G. Wilcox has received travel grants from Genzyme, Biomarin, Alexion, Amicus and Shire, speaker honoraria from Vitaflo, Biomarin, Shire and Nutricia, research grants from the MPS society (UK), and advisory board membership with Biomarin, Medical Advisory Panel membership for the National Society for PKU (NSPKU) and consultancies for Dimension Therapeutics (Ultragenyx).S.C.J Huijbregts has participated in strategic advisory boards and received honoraria as a consultant and/or speaker for Merck Serono SA, Biomarin and Nutricia.F.J. van Spronsen has received research grants, advisory board fees, and speaker’s honoraria from Nutricia Research, Merck-Serono, Biomarin, Codexis, Alexion, Vitaflo, MendeliKABS, Promethera, SOBI, APR, and ARLA Foods Int.All other authors did not report any no conflicts of interest.