@article{d53fcb7916574d3b9d01524996bfaf48,
title = "Undiagnosed Phenylketonuria Can Exist Everywhere: Results From an International Survey",
abstract = "Many countries do not have a newborn screening (NBS) program, and immigrants from such countries are at risk for late diagnosis of phenylketonuria (PKU). In this international survey, 52 of 259 patients (20%) with late diagnosed PKU were immigrants, and 145 of the 259 (55%) were born before NBS or in a location without NBS.",
keywords = "immigrant, late diagnosis, NBS, phenylketonuria, refugee",
author = "{van Wegberg}, {Annemiek M.J.} and Friedrich Trefz and Maria Gizewska and Sibtain Ahmed and Layachi Chabraoui and Zaki, {Maha S.} and Fran{\c c}ois Maillot and {van Spronsen}, {Francjan J.} and {Study Group on Missed PKU and Missed to Follow-Up} and K. Ahring and {Al Mutairi}, F. and Arnoux, {J. B.} and D. Ballhausen and J. Baruteau and L. Bernstein and S. Bijarnia-Mahay and F. Boemer and A. Bordugo and L. Brodosi and S. Brooks and Chew, {H. B.} and K. Chyz and M. Coker and C. Collingwood and V. Cornejo and Couce, {M. L.} and A. Cozens and S. Dahri and Das, {A. M.} and {de Laet}, C. and {de las Heras Montero}, J. and {de Vreugd}, A. and Debray, {F. G.} and M. Dercksen and M. Descartes and L. Diogo and E. Drogari and H. Eiroa and Eminoglu, {F. T.} and Enns, {G. M.} and F. Eyskens and F. Feillet and S. Ford and L. Franzson and P. Freisinger and P. Garcia and O. Grafakou and G. Gramer and S. Gray and U. Groselj and M. Kreile",
note = "Funding Information: A.v.W. has received a research grant from Nutricia , honoraria from Biomarin as speaker, and travel support from Nutricia and Vitaflo . M.G. has been a member of the scientific advisory boards of Merck-Serono SA, and Biomarin and has received honoraria as a consultant and/or speaker for Biomarin, Merck Serono SA, Nutricia, and Vitaflo. F.M. has been a member of scientific advisory boards for PKU of APR, Arla Food International, and BioMarin; has received research grants from Biomarin ; and has received honoraria as consultant and speaker from Biomarin and Vitaflo. F.T. has received grants from Vitaflo Germany and honoraria as a speaker for Merck-Serono SA. F.v.S. is a member of scientific advisory boards for PKU and amino acid defects that are supported by Agios , Applied Pharma Research , Arla Food International , BioMarin , Eurocept , Homology , Lucane , Nestle-Codexis Alliance , Nutricia , Orphan Europe , Rivium Medical BV , and Vivet ; has received research grants from Alexion , BioMarin , Beatrix Research Fund , Codexis , ESPKU , NPKUA , NPKUV , Nutricia , Sobi , Tyrosinemia Foundation , Vitaflo , and ZonMw ; and has received honoraria as a consultant and speaker from Applied Pharma Research, Biomarin, MendeliKABS, Nutricia, Orphan Europe, Pluvia Biotech, SoBi, and Vitaflo. The other authors declare no conflicts of interest. Funding Information: A.v.W. has received a research grant from Nutricia, honoraria from Biomarin as speaker, and travel support from Nutricia and Vitaflo. M.G. has been a member of the scientific advisory boards of Merck-Serono SA, and Biomarin and has received honoraria as a consultant and/or speaker for Biomarin, Merck Serono SA, Nutricia, and Vitaflo. F.M. has been a member of scientific advisory boards for PKU of APR, Arla Food International, and BioMarin; has received research grants from Biomarin; and has received honoraria as consultant and speaker from Biomarin and Vitaflo. F.T. has received grants from Vitaflo Germany and honoraria as a speaker for Merck-Serono SA. F.v.S. is a member of scientific advisory boards for PKU and amino acid defects that are supported by Agios, Applied Pharma Research, Arla Food International, BioMarin, Eurocept, Homology, Lucane, Nestle-Codexis Alliance, Nutricia, Orphan Europe, Rivium Medical BV, and Vivet; has received research grants from Alexion, BioMarin, Beatrix Research Fund, Codexis, ESPKU, NPKUA, NPKUV, Nutricia, Sobi, Tyrosinemia Foundation, Vitaflo, and ZonMw; and has received honoraria as a consultant and speaker from Applied Pharma Research, Biomarin, MendeliKABS, Nutricia, Orphan Europe, Pluvia Biotech, SoBi, and Vitaflo. The other authors declare no conflicts of interest. Funding and disclosure information is available at www.jpeds.com. Publisher Copyright: {\textcopyright} 2021 The Authors",
year = "2021",
month = dec,
doi = "10.1016/j.jpeds.2021.08.070",
language = "English",
volume = "239",
pages = "231--234.e2",
journal = "Journal of Pediatrics",
issn = "0022-3476",
publisher = "Mosby Inc.",
}
