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The study was approved by the local ethics committee of the coordinating center, the Medical Ethical Committee (<i>Medisch Ethische Toetsingscommissie<\/i>, METC) of the Maastricht University Medical Center +, and subsequently approved for all participating partners. Informed consent was obtained from all patients, or their parents\/guardians, prior to inclusion, data collections and entry.","order":1,"name":"Ethics","group":{"name":"EthicsHeading","label":"Ethics approval and consent to participate"}},{"value":"Consent was obtained from all patients for publication.","order":2,"name":"Ethics","group":{"name":"EthicsHeading","label":"Consent for publication"}},{"value":"M.E.R-G., M.H., B.B., A.I.C., D.C, M.L.C., C.D., D.D., T.D., F.E., M.T.F., S.G., J.H., M.H., A.H., H.H.H., P.J., J.K., I.K., P.L., Y.E.L., J.G.L., D.M., D.M-W., K.\u00d5., D.R., I.A.R., S.S-B., K.M.S., A.T., C.T., R.Va., G.V., R.Vo., M.V., S.E.W., M.W-K., S.B.W., M.G., E.P.T., G.T.B. declare that they have no competing interests. A.M.B. has received a speakers fee and has been a member of advisory boards for Nutricia and Biomarin. E.M. has received travel funding, research grants and support from Nutricia UK.","order":3,"name":"Ethics","group":{"name":"EthicsHeading","label":"Competing interests"}},{"value":"Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.","order":4,"name":"Ethics","group":{"name":"EthicsHeading","label":"Publisher\u2019s Note"}}],"article-number":"86"}}