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How strict is galactose restriction in adults with galactosaemia? International practice.

Identifieur interne : 002C93 ( Main/Exploration ); précédent : 002C92; suivant : 002C94

How strict is galactose restriction in adults with galactosaemia? International practice.

Auteurs : S. Adam [Royaume-Uni] ; R. Akroyd [Nouvelle-Zélande] ; S. Bernabei [Italie] ; S. Bollhalder [Suisse] ; S. Boocock [Royaume-Uni] ; A. Burlina [Italie] ; T. Coote [Nouvelle-Zélande] ; K. Corthouts [Belgique] ; J. Dalmau [Espagne] ; S. Dawson [Royaume-Uni] ; S. Defourny [Belgique] ; A. De Meyer [Belgique] ; A. Desloovere [Belgique] ; Y. Devlin [Royaume-Uni] ; M. Diels [Belgique] ; K. Dokoupil [Allemagne] ; S. Donald [Royaume-Uni] ; S. Evans [Royaume-Uni] ; I. Fasan [Italie] ; C. Ferguson [Royaume-Uni] ; S. Ford [Royaume-Uni] ; M. Forga [Espagne] ; G. Gallo [Italie] ; S C Grünert [Allemagne] ; M. Heddrich-Ellerbrok [Allemagne] ; C. Heidenborg [Suède] ; C. Jonkers [Pays-Bas] ; K. Lefebure [Australie] ; K. Luyten [Belgique] ; A. Macdonald [Royaume-Uni] ; U. Meyer [Allemagne] ; A. Micciche [Royaume-Uni] ; E. Müller [Allemagne] ; P. Portnoi [Royaume-Uni] ; S. Ripley [Royaume-Uni] ; M. Robert [Belgique] ; L V Robertson [Royaume-Uni] ; S. Rosenbaum-Fabian [Allemagne] ; K. Sahm [Allemagne] ; S. Schultz [Allemagne] ; K. Singleton [Royaume-Uni] ; E. Sjöqvist [Suède] ; L. Stoelen [Norvège] ; A. Terry [Royaume-Uni] ; S. Thompson [Australie] ; C. Timmer [Pays-Bas] ; K. Vande Kerckhove [Belgique] ; L. Van Der Ploeg [Pays-Bas] ; M. Van Driessche [Belgique] ; M. Van Rijn [Pays-Bas] ; A. Van Teeffelen-Heithoff [Allemagne] ; I. Vitoria [Espagne] ; C. Voillot [France] ; J. Wenz [France] ; M. Westbrook [Australie] ; J. Wildgoose [Royaume-Uni] ; H. Zweers [Pays-Bas]

Source :

RBID : pubmed:25873073

Descripteurs français

English descriptors

Abstract

Dietary management of 418 adult patients with galactosaemia (from 39 centres/12 countries) was compared. All centres advised lactose restriction, 6 restricted galactose from galactosides ± fruits and vegetables and 12 offal. 38% (n=15) relaxed diet by: 1) allowing traces of lactose in manufactured foods (n=13) or 2) giving fruits, vegetables and galactosides (n=2). Only 15% (n=6) calculated dietary galactose. 32% of patients were lost to dietetic follow-up. In adult galactosaemia, there is limited diet relaxation.

DOI: 10.1016/j.ymgme.2015.03.008
PubMed: 25873073


Affiliations:


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Le document en format XML

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<nlm:affiliation>Hospital La Fe, Valencia, Spain.</nlm:affiliation>
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<name sortKey="Dawson, S" sort="Dawson, S" uniqKey="Dawson S" first="S" last="Dawson">S. Dawson</name>
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<nlm:affiliation>Universitair Ziekenhuis Gent, Belgium.</nlm:affiliation>
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<name sortKey="Donald, S" sort="Donald, S" uniqKey="Donald S" first="S" last="Donald">S. Donald</name>
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<name sortKey="Evans, S" sort="Evans, S" uniqKey="Evans S" first="S" last="Evans">S. Evans</name>
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<wicri:regionArea>Birmingham Children's Hospital, Birmingham</wicri:regionArea>
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<name sortKey="Fasan, I" sort="Fasan, I" uniqKey="Fasan I" first="I" last="Fasan">I. Fasan</name>
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<name sortKey="Ferguson, C" sort="Ferguson, C" uniqKey="Ferguson C" first="C" last="Ferguson">C. Ferguson</name>
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<nlm:affiliation>Royal Victoria Hospital, Newcastle, UK.</nlm:affiliation>
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<name sortKey="Ford, S" sort="Ford, S" uniqKey="Ford S" first="S" last="Ford">S. Ford</name>
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<country xml:lang="fr">Espagne</country>
<wicri:regionArea>Hospital Clinic Barcelona</wicri:regionArea>
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<name sortKey="Gallo, G" sort="Gallo, G" uniqKey="Gallo G" first="G" last="Gallo">G. Gallo</name>
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<country xml:lang="fr">Italie</country>
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<name sortKey="Grunert, S C" sort="Grunert, S C" uniqKey="Grunert S" first="S C" last="Grünert">S C Grünert</name>
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<nlm:affiliation>University Children's Hospital Freiburg, Germany.</nlm:affiliation>
<country xml:lang="fr">Allemagne</country>
<wicri:regionArea>University Children's Hospital Freiburg</wicri:regionArea>
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<name sortKey="Heddrich Ellerbrok, M" sort="Heddrich Ellerbrok, M" uniqKey="Heddrich Ellerbrok M" first="M" last="Heddrich-Ellerbrok">M. Heddrich-Ellerbrok</name>
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<nlm:affiliation>Universitätsklinikum Hamburg-Eppendorf, Germany.</nlm:affiliation>
<country xml:lang="fr">Allemagne</country>
<wicri:regionArea>Universitätsklinikum Hamburg-Eppendorf</wicri:regionArea>
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<name sortKey="Heidenborg, C" sort="Heidenborg, C" uniqKey="Heidenborg C" first="C" last="Heidenborg">C. Heidenborg</name>
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<nlm:affiliation>Karolinska University Hospital Stockholm, Sweden.</nlm:affiliation>
<country xml:lang="fr">Suède</country>
<wicri:regionArea>Karolinska University Hospital Stockholm</wicri:regionArea>
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<name sortKey="Jonkers, C" sort="Jonkers, C" uniqKey="Jonkers C" first="C" last="Jonkers">C. Jonkers</name>
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<nlm:affiliation>Academic Medical Hospital, Amsterdam, Netherlands.</nlm:affiliation>
<country xml:lang="fr">Pays-Bas</country>
<wicri:regionArea>Academic Medical Hospital, Amsterdam</wicri:regionArea>
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<settlement type="city">Amsterdam</settlement>
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<name sortKey="Lefebure, K" sort="Lefebure, K" uniqKey="Lefebure K" first="K" last="Lefebure">K. Lefebure</name>
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<nlm:affiliation>Royal Melbourne Hospital, Melbourne, Australia.</nlm:affiliation>
<country xml:lang="fr">Australie</country>
<wicri:regionArea>Royal Melbourne Hospital, Melbourne</wicri:regionArea>
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<settlement type="city">Melbourne</settlement>
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<name sortKey="Luyten, K" sort="Luyten, K" uniqKey="Luyten K" first="K" last="Luyten">K. Luyten</name>
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<nlm:affiliation>Center of Metabolic Diseases, University Hospital, Antwerp, Belgium.</nlm:affiliation>
<country xml:lang="fr">Belgique</country>
<wicri:regionArea>Center of Metabolic Diseases, University Hospital, Antwerp</wicri:regionArea>
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<name sortKey="Macdonald, A" sort="Macdonald, A" uniqKey="Macdonald A" first="A" last="Macdonald">A. Macdonald</name>
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<nlm:affiliation>Birmingham Children's Hospital, Birmingham, UK. Electronic address: anita.macdonald@bch.nhs.uk.</nlm:affiliation>
<country xml:lang="fr">Royaume-Uni</country>
<wicri:regionArea>Birmingham Children's Hospital, Birmingham</wicri:regionArea>
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<settlement type="city">Birmingham</settlement>
<region type="country">Angleterre</region>
<region type="région" nuts="1">Midlands de l'Ouest</region>
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<name sortKey="Meyer, U" sort="Meyer, U" uniqKey="Meyer U" first="U" last="Meyer">U. Meyer</name>
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<nlm:affiliation>Clinic of Paediatric Kidney, Liver- and Metabolic Diseases Medical School Hannover, Germany.</nlm:affiliation>
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<wicri:noRegion>Liver- and Metabolic Diseases Medical School Hannover</wicri:noRegion>
<wicri:noRegion>Liver- and Metabolic Diseases Medical School Hannover</wicri:noRegion>
<wicri:noRegion>Liver- and Metabolic Diseases Medical School Hannover</wicri:noRegion>
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<name sortKey="Micciche, A" sort="Micciche, A" uniqKey="Micciche A" first="A" last="Micciche">A. Micciche</name>
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<nlm:affiliation>St Thomas' Hospital, London, UK.</nlm:affiliation>
<country xml:lang="fr">Royaume-Uni</country>
<wicri:regionArea>St Thomas' Hospital, London</wicri:regionArea>
<placeName>
<settlement type="city">Londres</settlement>
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<region type="région" nuts="1">Grand Londres</region>
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<name sortKey="Muller, E" sort="Muller, E" uniqKey="Muller E" first="E" last="Müller">E. Müller</name>
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<nlm:affiliation>Children's Hospital Heidelberg, Germany.</nlm:affiliation>
<country xml:lang="fr">Allemagne</country>
<wicri:regionArea>Children's Hospital Heidelberg</wicri:regionArea>
</affiliation>
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<author>
<name sortKey="Portnoi, P" sort="Portnoi, P" uniqKey="Portnoi P" first="P" last="Portnoi">P. Portnoi</name>
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<nlm:affiliation>Galactosemia Support Group, UK.</nlm:affiliation>
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<wicri:regionArea>Galactosemia Support Group</wicri:regionArea>
</affiliation>
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<author>
<name sortKey="Ripley, S" sort="Ripley, S" uniqKey="Ripley S" first="S" last="Ripley">S. Ripley</name>
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<nlm:affiliation>Salford Royal, Manchester, UK.</nlm:affiliation>
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<settlement type="city">Manchester</settlement>
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<name sortKey="Robert, M" sort="Robert, M" uniqKey="Robert M" first="M" last="Robert">M. Robert</name>
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<nlm:affiliation>Hôpital Universitaire des Enfants, Reine fabiola, Bruxelles, Belgium.</nlm:affiliation>
<country xml:lang="fr">Belgique</country>
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<author>
<name sortKey="Robertson, L V" sort="Robertson, L V" uniqKey="Robertson L" first="L V" last="Robertson">L V Robertson</name>
<affiliation wicri:level="1">
<nlm:affiliation>University Hospitals Birmingham NHS Foundation Trust, UK.</nlm:affiliation>
<country xml:lang="fr">Royaume-Uni</country>
<wicri:regionArea>University Hospitals Birmingham NHS Foundation Trust</wicri:regionArea>
</affiliation>
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<author>
<name sortKey="Rosenbaum Fabian, S" sort="Rosenbaum Fabian, S" uniqKey="Rosenbaum Fabian S" first="S" last="Rosenbaum-Fabian">S. Rosenbaum-Fabian</name>
<affiliation wicri:level="1">
<nlm:affiliation>University Children's Hospital Freiburg, Germany.</nlm:affiliation>
<country xml:lang="fr">Allemagne</country>
<wicri:regionArea>University Children's Hospital Freiburg</wicri:regionArea>
</affiliation>
</author>
<author>
<name sortKey="Sahm, K" sort="Sahm, K" uniqKey="Sahm K" first="K" last="Sahm">K. Sahm</name>
<affiliation wicri:level="1">
<nlm:affiliation>Children's Hospital Heidelberg, Germany.</nlm:affiliation>
<country xml:lang="fr">Allemagne</country>
<wicri:regionArea>Children's Hospital Heidelberg</wicri:regionArea>
</affiliation>
</author>
<author>
<name sortKey="Schultz, S" sort="Schultz, S" uniqKey="Schultz S" first="S" last="Schultz">S. Schultz</name>
<affiliation wicri:level="1">
<nlm:affiliation>Universitätsklinikum Hamburg-Eppendorf, Germany.</nlm:affiliation>
<country xml:lang="fr">Allemagne</country>
<wicri:regionArea>Universitätsklinikum Hamburg-Eppendorf</wicri:regionArea>
</affiliation>
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<author>
<name sortKey="Singleton, K" sort="Singleton, K" uniqKey="Singleton K" first="K" last="Singleton">K. Singleton</name>
<affiliation wicri:level="1">
<nlm:affiliation>University Hospital of Wales, Cardiff, UK.</nlm:affiliation>
<country xml:lang="fr">Royaume-Uni</country>
<wicri:regionArea>University Hospital of Wales, Cardiff</wicri:regionArea>
<wicri:noRegion>Cardiff</wicri:noRegion>
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<author>
<name sortKey="Sjoqvist, E" sort="Sjoqvist, E" uniqKey="Sjoqvist E" first="E" last="Sjöqvist">E. Sjöqvist</name>
<affiliation wicri:level="1">
<nlm:affiliation>Children's Hospital, University Hospital Skåne, Sweden.</nlm:affiliation>
<country xml:lang="fr">Suède</country>
<wicri:regionArea>Children's Hospital, University Hospital Skåne</wicri:regionArea>
<wicri:noRegion>University Hospital Skåne</wicri:noRegion>
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</placeName>
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<country xml:lang="fr">Pays-Bas</country>
<wicri:regionArea>UMC Utrecht</wicri:regionArea>
</affiliation>
</author>
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<name sortKey="Vande Kerckhove, K" sort="Vande Kerckhove, K" uniqKey="Vande Kerckhove K" first="K" last="Vande Kerckhove">K. Vande Kerckhove</name>
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<nlm:affiliation>University Hospitals Leuven, Center of Metabolic Diseases, Belgium.</nlm:affiliation>
<country xml:lang="fr">Belgique</country>
<wicri:regionArea>University Hospitals Leuven, Center of Metabolic Diseases</wicri:regionArea>
<wicri:noRegion>Center of Metabolic Diseases</wicri:noRegion>
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<nlm:affiliation>University Hospital Maastricht, Netherlands.</nlm:affiliation>
<country xml:lang="fr">Pays-Bas</country>
<wicri:regionArea>University Hospital Maastricht</wicri:regionArea>
</affiliation>
</author>
<author>
<name sortKey="Van Driessche, M" sort="Van Driessche, M" uniqKey="Van Driessche M" first="M" last="Van Driessche">M. Van Driessche</name>
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<nlm:affiliation>Universitair Ziekenhuis Gent, Belgium.</nlm:affiliation>
<country xml:lang="fr">Belgique</country>
<wicri:regionArea>Universitair Ziekenhuis Gent</wicri:regionArea>
</affiliation>
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<nlm:affiliation>University of Groningen, University Medical Center Groningen, Netherlands.</nlm:affiliation>
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<name sortKey="Van Teeffelen Heithoff, A" sort="Van Teeffelen Heithoff, A" uniqKey="Van Teeffelen Heithoff A" first="A" last="Van Teeffelen-Heithoff">A. Van Teeffelen-Heithoff</name>
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<nlm:affiliation>Hospital La Fe, Valencia, Spain.</nlm:affiliation>
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<wicri:regionArea>Hospital La Fe, Valencia</wicri:regionArea>
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<nlm:affiliation>Hôpital Antoine Béclère, France.</nlm:affiliation>
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<wicri:regionArea>Hôpital Antoine Béclère</wicri:regionArea>
</affiliation>
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<nlm:affiliation>Westmead Hospital, Sydney, Australia.</nlm:affiliation>
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<settlement type="city">Sydney</settlement>
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</placeName>
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<nlm:affiliation>Bradford Teaching Hospital NHS Trust, UK.</nlm:affiliation>
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<wicri:regionArea>Bradford Teaching Hospital NHS Trust</wicri:regionArea>
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<nlm:affiliation>Radboud UMC, Netherlands.</nlm:affiliation>
<country xml:lang="fr">Pays-Bas</country>
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<title xml:lang="en">How strict is galactose restriction in adults with galactosaemia? International practice.</title>
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<name sortKey="Adam, S" sort="Adam, S" uniqKey="Adam S" first="S" last="Adam">S. Adam</name>
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<nlm:affiliation>Royal Hospital for Sick Children, Glasgow, UK.</nlm:affiliation>
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<wicri:regionArea>Royal Hospital for Sick Children, Glasgow</wicri:regionArea>
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<nlm:affiliation>National Metabolic Service, Starship Children's Health and Auckland City Hospital, Auckland, New Zealand.</nlm:affiliation>
<country xml:lang="fr">Nouvelle-Zélande</country>
<wicri:regionArea>National Metabolic Service, Starship Children's Health and Auckland City Hospital, Auckland</wicri:regionArea>
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<nlm:affiliation>Ospedale pediatrico Bambino Gesù, Rome, Italy.</nlm:affiliation>
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<nlm:affiliation>UniversitätsSpital Zürich, Switzerland.</nlm:affiliation>
<country xml:lang="fr">Suisse</country>
<wicri:regionArea>UniversitätsSpital Zürich</wicri:regionArea>
</affiliation>
</author>
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<name sortKey="Boocock, S" sort="Boocock, S" uniqKey="Boocock S" first="S" last="Boocock">S. Boocock</name>
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<nlm:affiliation>University Hospitals Birmingham NHS Foundation Trust, UK.</nlm:affiliation>
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<wicri:regionArea>University Hospitals Birmingham NHS Foundation Trust</wicri:regionArea>
</affiliation>
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<nlm:affiliation>Division of Inherited Metabolic Diseases, Reference Centre Expanded Newborn Screening, Department of Pediatrics, University Hospital, Padova, Italy.</nlm:affiliation>
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<name sortKey="Coote, T" sort="Coote, T" uniqKey="Coote T" first="T" last="Coote">T. Coote</name>
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<country xml:lang="fr">Nouvelle-Zélande</country>
<wicri:regionArea>National Metabolic Service, Starship Children's Health and Auckland City Hospital, Auckland</wicri:regionArea>
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<name sortKey="Corthouts, K" sort="Corthouts, K" uniqKey="Corthouts K" first="K" last="Corthouts">K. Corthouts</name>
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<nlm:affiliation>University Hospitals Leuven, Center of Metabolic Diseases, Belgium.</nlm:affiliation>
<country xml:lang="fr">Belgique</country>
<wicri:regionArea>University Hospitals Leuven, Center of Metabolic Diseases</wicri:regionArea>
<wicri:noRegion>Center of Metabolic Diseases</wicri:noRegion>
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<nlm:affiliation>Hospital La Fe, Valencia, Spain.</nlm:affiliation>
<country xml:lang="fr">Espagne</country>
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<wicri:noRegion>Valencia</wicri:noRegion>
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<nlm:affiliation>Center of Metabolic Diseases, University Hospital, Antwerp, Belgium.</nlm:affiliation>
<country xml:lang="fr">Belgique</country>
<wicri:regionArea>Center of Metabolic Diseases, University Hospital, Antwerp</wicri:regionArea>
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<name sortKey="Desloovere, A" sort="Desloovere, A" uniqKey="Desloovere A" first="A" last="Desloovere">A. Desloovere</name>
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<nlm:affiliation>Universitair Ziekenhuis Gent, Belgium.</nlm:affiliation>
<country xml:lang="fr">Belgique</country>
<wicri:regionArea>Universitair Ziekenhuis Gent</wicri:regionArea>
</affiliation>
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<name sortKey="Devlin, Y" sort="Devlin, Y" uniqKey="Devlin Y" first="Y" last="Devlin">Y. Devlin</name>
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<nlm:affiliation>Royal Victoria Hospital, Newcastle, UK.</nlm:affiliation>
<country xml:lang="fr">Royaume-Uni</country>
<wicri:regionArea>Royal Victoria Hospital, Newcastle</wicri:regionArea>
<wicri:noRegion>Newcastle</wicri:noRegion>
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<name sortKey="Diels, M" sort="Diels, M" uniqKey="Diels M" first="M" last="Diels">M. Diels</name>
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<nlm:affiliation>University Hospitals Leuven, Center of Metabolic Diseases, Belgium.</nlm:affiliation>
<country xml:lang="fr">Belgique</country>
<wicri:regionArea>University Hospitals Leuven, Center of Metabolic Diseases</wicri:regionArea>
<wicri:noRegion>Center of Metabolic Diseases</wicri:noRegion>
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<name sortKey="Dokoupil, K" sort="Dokoupil, K" uniqKey="Dokoupil K" first="K" last="Dokoupil">K. Dokoupil</name>
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<nlm:affiliation>Dr. von Hauner Children's Hospital, Munich, Germany.</nlm:affiliation>
<country xml:lang="fr">Allemagne</country>
<wicri:regionArea>Dr. von Hauner Children's Hospital, Munich</wicri:regionArea>
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<region type="land" nuts="1">Bavière</region>
<region type="district" nuts="2">District de Haute-Bavière</region>
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<name sortKey="Donald, S" sort="Donald, S" uniqKey="Donald S" first="S" last="Donald">S. Donald</name>
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<nlm:affiliation>Addenbrookes, Cambridge, UK.</nlm:affiliation>
<country xml:lang="fr">Royaume-Uni</country>
<wicri:regionArea>Addenbrookes, Cambridge</wicri:regionArea>
<wicri:noRegion>Cambridge</wicri:noRegion>
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</author>
<author>
<name sortKey="Evans, S" sort="Evans, S" uniqKey="Evans S" first="S" last="Evans">S. Evans</name>
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<nlm:affiliation>Birmingham Children's Hospital, Birmingham, UK.</nlm:affiliation>
<country xml:lang="fr">Royaume-Uni</country>
<wicri:regionArea>Birmingham Children's Hospital, Birmingham</wicri:regionArea>
<placeName>
<settlement type="city">Birmingham</settlement>
<region type="country">Angleterre</region>
<region type="région" nuts="1">Midlands de l'Ouest</region>
</placeName>
</affiliation>
</author>
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<name sortKey="Fasan, I" sort="Fasan, I" uniqKey="Fasan I" first="I" last="Fasan">I. Fasan</name>
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<nlm:affiliation>Division of Inherited Metabolic Diseases, Reference Centre Expanded Newborn Screening, Department of Pediatrics, University Hospital, Padova, Italy.</nlm:affiliation>
<country xml:lang="fr">Italie</country>
<wicri:regionArea>Division of Inherited Metabolic Diseases, Reference Centre Expanded Newborn Screening, Department of Pediatrics, University Hospital, Padova</wicri:regionArea>
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<name sortKey="Ferguson, C" sort="Ferguson, C" uniqKey="Ferguson C" first="C" last="Ferguson">C. Ferguson</name>
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<nlm:affiliation>Royal Victoria Hospital, Newcastle, UK.</nlm:affiliation>
<country xml:lang="fr">Royaume-Uni</country>
<wicri:regionArea>Royal Victoria Hospital, Newcastle</wicri:regionArea>
<wicri:noRegion>Newcastle</wicri:noRegion>
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<author>
<name sortKey="Ford, S" sort="Ford, S" uniqKey="Ford S" first="S" last="Ford">S. Ford</name>
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<nlm:affiliation>North Bristol NHS Trust Southmead and Frenchay, UK.</nlm:affiliation>
<country xml:lang="fr">Royaume-Uni</country>
<wicri:regionArea>North Bristol NHS Trust Southmead and Frenchay</wicri:regionArea>
</affiliation>
</author>
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<name sortKey="Forga, M" sort="Forga, M" uniqKey="Forga M" first="M" last="Forga">M. Forga</name>
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<nlm:affiliation>Hospital Clinic Barcelona, Spain.</nlm:affiliation>
<country xml:lang="fr">Espagne</country>
<wicri:regionArea>Hospital Clinic Barcelona</wicri:regionArea>
</affiliation>
</author>
<author>
<name sortKey="Gallo, G" sort="Gallo, G" uniqKey="Gallo G" first="G" last="Gallo">G. Gallo</name>
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<nlm:affiliation>Ospedale pediatrico Bambino Gesù, Rome, Italy.</nlm:affiliation>
<country xml:lang="fr">Italie</country>
<wicri:regionArea>Ospedale pediatrico Bambino Gesù, Rome</wicri:regionArea>
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<settlement type="city">Rome</settlement>
<region nuts="2">Latium</region>
</placeName>
</affiliation>
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<author>
<name sortKey="Grunert, S C" sort="Grunert, S C" uniqKey="Grunert S" first="S C" last="Grünert">S C Grünert</name>
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<nlm:affiliation>University Children's Hospital Freiburg, Germany.</nlm:affiliation>
<country xml:lang="fr">Allemagne</country>
<wicri:regionArea>University Children's Hospital Freiburg</wicri:regionArea>
</affiliation>
</author>
<author>
<name sortKey="Heddrich Ellerbrok, M" sort="Heddrich Ellerbrok, M" uniqKey="Heddrich Ellerbrok M" first="M" last="Heddrich-Ellerbrok">M. Heddrich-Ellerbrok</name>
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<nlm:affiliation>Universitätsklinikum Hamburg-Eppendorf, Germany.</nlm:affiliation>
<country xml:lang="fr">Allemagne</country>
<wicri:regionArea>Universitätsklinikum Hamburg-Eppendorf</wicri:regionArea>
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<author>
<name sortKey="Heidenborg, C" sort="Heidenborg, C" uniqKey="Heidenborg C" first="C" last="Heidenborg">C. Heidenborg</name>
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<nlm:affiliation>Karolinska University Hospital Stockholm, Sweden.</nlm:affiliation>
<country xml:lang="fr">Suède</country>
<wicri:regionArea>Karolinska University Hospital Stockholm</wicri:regionArea>
</affiliation>
</author>
<author>
<name sortKey="Jonkers, C" sort="Jonkers, C" uniqKey="Jonkers C" first="C" last="Jonkers">C. Jonkers</name>
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<nlm:affiliation>Academic Medical Hospital, Amsterdam, Netherlands.</nlm:affiliation>
<country xml:lang="fr">Pays-Bas</country>
<wicri:regionArea>Academic Medical Hospital, Amsterdam</wicri:regionArea>
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<settlement type="city">Amsterdam</settlement>
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</placeName>
</affiliation>
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<name sortKey="Lefebure, K" sort="Lefebure, K" uniqKey="Lefebure K" first="K" last="Lefebure">K. Lefebure</name>
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<nlm:affiliation>Royal Melbourne Hospital, Melbourne, Australia.</nlm:affiliation>
<country xml:lang="fr">Australie</country>
<wicri:regionArea>Royal Melbourne Hospital, Melbourne</wicri:regionArea>
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<settlement type="city">Melbourne</settlement>
<region type="état">Victoria (État)</region>
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</affiliation>
</author>
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<name sortKey="Luyten, K" sort="Luyten, K" uniqKey="Luyten K" first="K" last="Luyten">K. Luyten</name>
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<nlm:affiliation>Center of Metabolic Diseases, University Hospital, Antwerp, Belgium.</nlm:affiliation>
<country xml:lang="fr">Belgique</country>
<wicri:regionArea>Center of Metabolic Diseases, University Hospital, Antwerp</wicri:regionArea>
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<name sortKey="Macdonald, A" sort="Macdonald, A" uniqKey="Macdonald A" first="A" last="Macdonald">A. Macdonald</name>
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<country xml:lang="fr">Royaume-Uni</country>
<wicri:regionArea>Birmingham Children's Hospital, Birmingham</wicri:regionArea>
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<settlement type="city">Birmingham</settlement>
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<author>
<name sortKey="Meyer, U" sort="Meyer, U" uniqKey="Meyer U" first="U" last="Meyer">U. Meyer</name>
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<wicri:noRegion>Liver- and Metabolic Diseases Medical School Hannover</wicri:noRegion>
<wicri:noRegion>Liver- and Metabolic Diseases Medical School Hannover</wicri:noRegion>
<wicri:noRegion>Liver- and Metabolic Diseases Medical School Hannover</wicri:noRegion>
</affiliation>
</author>
<author>
<name sortKey="Micciche, A" sort="Micciche, A" uniqKey="Micciche A" first="A" last="Micciche">A. Micciche</name>
<affiliation wicri:level="3">
<nlm:affiliation>St Thomas' Hospital, London, UK.</nlm:affiliation>
<country xml:lang="fr">Royaume-Uni</country>
<wicri:regionArea>St Thomas' Hospital, London</wicri:regionArea>
<placeName>
<settlement type="city">Londres</settlement>
<region type="country">Angleterre</region>
<region type="région" nuts="1">Grand Londres</region>
</placeName>
</affiliation>
</author>
<author>
<name sortKey="Muller, E" sort="Muller, E" uniqKey="Muller E" first="E" last="Müller">E. Müller</name>
<affiliation wicri:level="1">
<nlm:affiliation>Children's Hospital Heidelberg, Germany.</nlm:affiliation>
<country xml:lang="fr">Allemagne</country>
<wicri:regionArea>Children's Hospital Heidelberg</wicri:regionArea>
</affiliation>
</author>
<author>
<name sortKey="Portnoi, P" sort="Portnoi, P" uniqKey="Portnoi P" first="P" last="Portnoi">P. Portnoi</name>
<affiliation wicri:level="1">
<nlm:affiliation>Galactosemia Support Group, UK.</nlm:affiliation>
<country xml:lang="fr">Royaume-Uni</country>
<wicri:regionArea>Galactosemia Support Group</wicri:regionArea>
</affiliation>
</author>
<author>
<name sortKey="Ripley, S" sort="Ripley, S" uniqKey="Ripley S" first="S" last="Ripley">S. Ripley</name>
<affiliation wicri:level="3">
<nlm:affiliation>Salford Royal, Manchester, UK.</nlm:affiliation>
<country xml:lang="fr">Royaume-Uni</country>
<wicri:regionArea>Salford Royal, Manchester</wicri:regionArea>
<placeName>
<settlement type="city">Manchester</settlement>
<region type="country">Angleterre</region>
<region type="région" nuts="1">Grand Manchester</region>
</placeName>
</affiliation>
</author>
<author>
<name sortKey="Robert, M" sort="Robert, M" uniqKey="Robert M" first="M" last="Robert">M. Robert</name>
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<nlm:affiliation>Hôpital Universitaire des Enfants, Reine fabiola, Bruxelles, Belgium.</nlm:affiliation>
<country xml:lang="fr">Belgique</country>
<wicri:regionArea>Hôpital Universitaire des Enfants, Reine fabiola, Bruxelles</wicri:regionArea>
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<settlement type="city">Bruxelles</settlement>
<region nuts="2">Région de Bruxelles-Capitale</region>
</placeName>
</affiliation>
</author>
<author>
<name sortKey="Robertson, L V" sort="Robertson, L V" uniqKey="Robertson L" first="L V" last="Robertson">L V Robertson</name>
<affiliation wicri:level="1">
<nlm:affiliation>University Hospitals Birmingham NHS Foundation Trust, UK.</nlm:affiliation>
<country xml:lang="fr">Royaume-Uni</country>
<wicri:regionArea>University Hospitals Birmingham NHS Foundation Trust</wicri:regionArea>
</affiliation>
</author>
<author>
<name sortKey="Rosenbaum Fabian, S" sort="Rosenbaum Fabian, S" uniqKey="Rosenbaum Fabian S" first="S" last="Rosenbaum-Fabian">S. Rosenbaum-Fabian</name>
<affiliation wicri:level="1">
<nlm:affiliation>University Children's Hospital Freiburg, Germany.</nlm:affiliation>
<country xml:lang="fr">Allemagne</country>
<wicri:regionArea>University Children's Hospital Freiburg</wicri:regionArea>
</affiliation>
</author>
<author>
<name sortKey="Sahm, K" sort="Sahm, K" uniqKey="Sahm K" first="K" last="Sahm">K. Sahm</name>
<affiliation wicri:level="1">
<nlm:affiliation>Children's Hospital Heidelberg, Germany.</nlm:affiliation>
<country xml:lang="fr">Allemagne</country>
<wicri:regionArea>Children's Hospital Heidelberg</wicri:regionArea>
</affiliation>
</author>
<author>
<name sortKey="Schultz, S" sort="Schultz, S" uniqKey="Schultz S" first="S" last="Schultz">S. Schultz</name>
<affiliation wicri:level="1">
<nlm:affiliation>Universitätsklinikum Hamburg-Eppendorf, Germany.</nlm:affiliation>
<country xml:lang="fr">Allemagne</country>
<wicri:regionArea>Universitätsklinikum Hamburg-Eppendorf</wicri:regionArea>
</affiliation>
</author>
<author>
<name sortKey="Singleton, K" sort="Singleton, K" uniqKey="Singleton K" first="K" last="Singleton">K. Singleton</name>
<affiliation wicri:level="1">
<nlm:affiliation>University Hospital of Wales, Cardiff, UK.</nlm:affiliation>
<country xml:lang="fr">Royaume-Uni</country>
<wicri:regionArea>University Hospital of Wales, Cardiff</wicri:regionArea>
<wicri:noRegion>Cardiff</wicri:noRegion>
</affiliation>
</author>
<author>
<name sortKey="Sjoqvist, E" sort="Sjoqvist, E" uniqKey="Sjoqvist E" first="E" last="Sjöqvist">E. Sjöqvist</name>
<affiliation wicri:level="1">
<nlm:affiliation>Children's Hospital, University Hospital Skåne, Sweden.</nlm:affiliation>
<country xml:lang="fr">Suède</country>
<wicri:regionArea>Children's Hospital, University Hospital Skåne</wicri:regionArea>
<wicri:noRegion>University Hospital Skåne</wicri:noRegion>
</affiliation>
</author>
<author>
<name sortKey="Stoelen, L" sort="Stoelen, L" uniqKey="Stoelen L" first="L" last="Stoelen">L. Stoelen</name>
<affiliation wicri:level="1">
<nlm:affiliation>Oslo University Hospital Rikshospitalet, Norway.</nlm:affiliation>
<country xml:lang="fr">Norvège</country>
<wicri:regionArea>Oslo University Hospital Rikshospitalet</wicri:regionArea>
</affiliation>
</author>
<author>
<name sortKey="Terry, A" sort="Terry, A" uniqKey="Terry A" first="A" last="Terry">A. Terry</name>
<affiliation wicri:level="1">
<nlm:affiliation>Alderhey Children's Hospital, Liverpool, UK.</nlm:affiliation>
<country xml:lang="fr">Royaume-Uni</country>
<wicri:regionArea>Alderhey Children's Hospital, Liverpool</wicri:regionArea>
<wicri:noRegion>Liverpool</wicri:noRegion>
</affiliation>
</author>
<author>
<name sortKey="Thompson, S" sort="Thompson, S" uniqKey="Thompson S" first="S" last="Thompson">S. Thompson</name>
<affiliation wicri:level="3">
<nlm:affiliation>Children's Hospital, Westmead, Sydney, Australia.</nlm:affiliation>
<country xml:lang="fr">Australie</country>
<wicri:regionArea>Children's Hospital, Westmead, Sydney</wicri:regionArea>
<placeName>
<settlement type="city">Sydney</settlement>
<region type="état">Nouvelle-Galles du Sud</region>
</placeName>
</affiliation>
</author>
<author>
<name sortKey="Timmer, C" sort="Timmer, C" uniqKey="Timmer C" first="C" last="Timmer">C. Timmer</name>
<affiliation wicri:level="1">
<nlm:affiliation>UMC Utrecht, Netherlands.</nlm:affiliation>
<country xml:lang="fr">Pays-Bas</country>
<wicri:regionArea>UMC Utrecht</wicri:regionArea>
</affiliation>
</author>
<author>
<name sortKey="Vande Kerckhove, K" sort="Vande Kerckhove, K" uniqKey="Vande Kerckhove K" first="K" last="Vande Kerckhove">K. Vande Kerckhove</name>
<affiliation wicri:level="1">
<nlm:affiliation>University Hospitals Leuven, Center of Metabolic Diseases, Belgium.</nlm:affiliation>
<country xml:lang="fr">Belgique</country>
<wicri:regionArea>University Hospitals Leuven, Center of Metabolic Diseases</wicri:regionArea>
<wicri:noRegion>Center of Metabolic Diseases</wicri:noRegion>
</affiliation>
</author>
<author>
<name sortKey="Van Der Ploeg, L" sort="Van Der Ploeg, L" uniqKey="Van Der Ploeg L" first="L" last="Van Der Ploeg">L. Van Der Ploeg</name>
<affiliation wicri:level="1">
<nlm:affiliation>University Hospital Maastricht, Netherlands.</nlm:affiliation>
<country xml:lang="fr">Pays-Bas</country>
<wicri:regionArea>University Hospital Maastricht</wicri:regionArea>
</affiliation>
</author>
<author>
<name sortKey="Van Driessche, M" sort="Van Driessche, M" uniqKey="Van Driessche M" first="M" last="Van Driessche">M. Van Driessche</name>
<affiliation wicri:level="1">
<nlm:affiliation>Universitair Ziekenhuis Gent, Belgium.</nlm:affiliation>
<country xml:lang="fr">Belgique</country>
<wicri:regionArea>Universitair Ziekenhuis Gent</wicri:regionArea>
</affiliation>
</author>
<author>
<name sortKey="Van Rijn, M" sort="Van Rijn, M" uniqKey="Van Rijn M" first="M" last="Van Rijn">M. Van Rijn</name>
<affiliation wicri:level="4">
<nlm:affiliation>University of Groningen, University Medical Center Groningen, Netherlands.</nlm:affiliation>
<country xml:lang="fr">Pays-Bas</country>
<wicri:regionArea>University of Groningen, University Medical Center Groningen</wicri:regionArea>
<orgName type="university">Université de Groningue</orgName>
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<settlement type="city">Groningue (ville)</settlement>
<region>Groningue (province)</region>
</placeName>
</affiliation>
</author>
<author>
<name sortKey="Van Teeffelen Heithoff, A" sort="Van Teeffelen Heithoff, A" uniqKey="Van Teeffelen Heithoff A" first="A" last="Van Teeffelen-Heithoff">A. Van Teeffelen-Heithoff</name>
<affiliation wicri:level="1">
<nlm:affiliation>Univ.-Kinderklinik, Pädiatrische Diätetik, Munster, Germany.</nlm:affiliation>
<country xml:lang="fr">Allemagne</country>
<wicri:regionArea>Univ.-Kinderklinik, Pädiatrische Diätetik, Munster</wicri:regionArea>
<wicri:noRegion>Munster</wicri:noRegion>
<wicri:noRegion>Munster</wicri:noRegion>
<wicri:noRegion>Munster</wicri:noRegion>
</affiliation>
</author>
<author>
<name sortKey="Vitoria, I" sort="Vitoria, I" uniqKey="Vitoria I" first="I" last="Vitoria">I. Vitoria</name>
<affiliation wicri:level="1">
<nlm:affiliation>Hospital La Fe, Valencia, Spain.</nlm:affiliation>
<country xml:lang="fr">Espagne</country>
<wicri:regionArea>Hospital La Fe, Valencia</wicri:regionArea>
<wicri:noRegion>Valencia</wicri:noRegion>
</affiliation>
</author>
<author>
<name sortKey="Voillot, C" sort="Voillot, C" uniqKey="Voillot C" first="C" last="Voillot">C. Voillot</name>
<affiliation wicri:level="1">
<nlm:affiliation>Hôpital Antoine Béclère, France.</nlm:affiliation>
<country xml:lang="fr">France</country>
<wicri:regionArea>Hôpital Antoine Béclère</wicri:regionArea>
</affiliation>
</author>
<author>
<name sortKey="Wenz, J" sort="Wenz, J" uniqKey="Wenz J" first="J" last="Wenz">J. Wenz</name>
<affiliation wicri:level="3">
<nlm:affiliation>CHU Bicëtre Hospital, Paris, France.</nlm:affiliation>
<country xml:lang="fr">France</country>
<wicri:regionArea>CHU Bicëtre Hospital, Paris</wicri:regionArea>
<placeName>
<region type="region">Île-de-France</region>
<region type="old region">Île-de-France</region>
<settlement type="city">Paris</settlement>
</placeName>
</affiliation>
</author>
<author>
<name sortKey="Westbrook, M" sort="Westbrook, M" uniqKey="Westbrook M" first="M" last="Westbrook">M. Westbrook</name>
<affiliation wicri:level="3">
<nlm:affiliation>Westmead Hospital, Sydney, Australia.</nlm:affiliation>
<country xml:lang="fr">Australie</country>
<wicri:regionArea>Westmead Hospital, Sydney</wicri:regionArea>
<placeName>
<settlement type="city">Sydney</settlement>
<region type="état">Nouvelle-Galles du Sud</region>
</placeName>
</affiliation>
</author>
<author>
<name sortKey="Wildgoose, J" sort="Wildgoose, J" uniqKey="Wildgoose J" first="J" last="Wildgoose">J. Wildgoose</name>
<affiliation wicri:level="1">
<nlm:affiliation>Bradford Teaching Hospital NHS Trust, UK.</nlm:affiliation>
<country xml:lang="fr">Royaume-Uni</country>
<wicri:regionArea>Bradford Teaching Hospital NHS Trust</wicri:regionArea>
</affiliation>
</author>
<author>
<name sortKey="Zweers, H" sort="Zweers, H" uniqKey="Zweers H" first="H" last="Zweers">H. Zweers</name>
<affiliation wicri:level="1">
<nlm:affiliation>Radboud UMC, Netherlands.</nlm:affiliation>
<country xml:lang="fr">Pays-Bas</country>
<wicri:regionArea>Radboud UMC</wicri:regionArea>
</affiliation>
</author>
</analytic>
<series>
<title level="j">Molecular genetics and metabolism</title>
<idno type="eISSN">1096-7206</idno>
<imprint>
<date when="2015" type="published">2015</date>
</imprint>
</series>
</biblStruct>
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<profileDesc>
<textClass>
<keywords scheme="KwdEn" xml:lang="en">
<term>Adult</term>
<term>Diet</term>
<term>Food</term>
<term>Fruit</term>
<term>Galactose (administration & dosage)</term>
<term>Galactosemias (diet therapy)</term>
<term>Humans</term>
<term>Lactose (administration & dosage)</term>
<term>Surveys and Questionnaires</term>
<term>Vegetables</term>
</keywords>
<keywords scheme="KwdFr" xml:lang="fr">
<term>Adulte</term>
<term>Aliments</term>
<term>Enquêtes et questionnaires</term>
<term>Fruit</term>
<term>Galactose (administration et posologie)</term>
<term>Galactosémies (diétothérapie)</term>
<term>Humains</term>
<term>Lactose (administration et posologie)</term>
<term>Légumes</term>
<term>Régime alimentaire</term>
</keywords>
<keywords scheme="MESH" type="chemical" qualifier="administration & dosage" xml:lang="en">
<term>Galactose</term>
<term>Lactose</term>
</keywords>
<keywords scheme="MESH" qualifier="administration et posologie" xml:lang="fr">
<term>Galactose</term>
<term>Lactose</term>
</keywords>
<keywords scheme="MESH" qualifier="diet therapy" xml:lang="en">
<term>Galactosemias</term>
</keywords>
<keywords scheme="MESH" qualifier="diétothérapie" xml:lang="fr">
<term>Galactosémies</term>
</keywords>
<keywords scheme="MESH" xml:lang="en">
<term>Adult</term>
<term>Diet</term>
<term>Food</term>
<term>Fruit</term>
<term>Humans</term>
<term>Surveys and Questionnaires</term>
<term>Vegetables</term>
</keywords>
<keywords scheme="MESH" xml:lang="fr">
<term>Adulte</term>
<term>Aliments</term>
<term>Enquêtes et questionnaires</term>
<term>Fruit</term>
<term>Humains</term>
<term>Légumes</term>
<term>Régime alimentaire</term>
</keywords>
</textClass>
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</teiHeader>
<front>
<div type="abstract" xml:lang="en">Dietary management of 418 adult patients with galactosaemia (from 39 centres/12 countries) was compared. All centres advised lactose restriction, 6 restricted galactose from galactosides ± fruits and vegetables and 12 offal. 38% (n=15) relaxed diet by: 1) allowing traces of lactose in manufactured foods (n=13) or 2) giving fruits, vegetables and galactosides (n=2). Only 15% (n=6) calculated dietary galactose. 32% of patients were lost to dietetic follow-up. In adult galactosaemia, there is limited diet relaxation.</div>
</front>
</TEI>
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<li>Allemagne</li>
<li>Australie</li>
<li>Belgique</li>
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<li>Italie</li>
<li>Norvège</li>
<li>Nouvelle-Zélande</li>
<li>Pays-Bas</li>
<li>Royaume-Uni</li>
<li>Suisse</li>
<li>Suède</li>
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<li>Bavière</li>
<li>District de Haute-Bavière</li>
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<li>Groningue (province)</li>
<li>Hollande-Septentrionale</li>
<li>Latium</li>
<li>Midlands de l'Ouest</li>
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<li>Île-de-France</li>
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<li>Melbourne</li>
<li>Munich</li>
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<li>Université de Groningue</li>
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<name sortKey="Dawson, S" sort="Dawson, S" uniqKey="Dawson S" first="S" last="Dawson">S. Dawson</name>
<name sortKey="Devlin, Y" sort="Devlin, Y" uniqKey="Devlin Y" first="Y" last="Devlin">Y. Devlin</name>
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<country name="Suisse">
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<name sortKey="Bollhalder, S" sort="Bollhalder, S" uniqKey="Bollhalder S" first="S" last="Bollhalder">S. Bollhalder</name>
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</country>
<country name="Belgique">
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<name sortKey="Corthouts, K" sort="Corthouts, K" uniqKey="Corthouts K" first="K" last="Corthouts">K. Corthouts</name>
</noRegion>
<name sortKey="De Meyer, A" sort="De Meyer, A" uniqKey="De Meyer A" first="A" last="De Meyer">A. De Meyer</name>
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<name sortKey="Desloovere, A" sort="Desloovere, A" uniqKey="Desloovere A" first="A" last="Desloovere">A. Desloovere</name>
<name sortKey="Diels, M" sort="Diels, M" uniqKey="Diels M" first="M" last="Diels">M. Diels</name>
<name sortKey="Luyten, K" sort="Luyten, K" uniqKey="Luyten K" first="K" last="Luyten">K. Luyten</name>
<name sortKey="Robert, M" sort="Robert, M" uniqKey="Robert M" first="M" last="Robert">M. Robert</name>
<name sortKey="Van Driessche, M" sort="Van Driessche, M" uniqKey="Van Driessche M" first="M" last="Van Driessche">M. Van Driessche</name>
<name sortKey="Vande Kerckhove, K" sort="Vande Kerckhove, K" uniqKey="Vande Kerckhove K" first="K" last="Vande Kerckhove">K. Vande Kerckhove</name>
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<name sortKey="Dalmau, J" sort="Dalmau, J" uniqKey="Dalmau J" first="J" last="Dalmau">J. Dalmau</name>
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<name sortKey="Grunert, S C" sort="Grunert, S C" uniqKey="Grunert S" first="S C" last="Grünert">S C Grünert</name>
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