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How strict is galactose restriction in adults with galactosaemia? International practice.
Adam, S; Akroyd, R; Bernabei, S; Bollhalder, S; Boocock, S; Burlina, A; Coote, T; Corthouts, K; Dalmau, J; Dawson, S; Defourny, S; De Meyer, A; Desloovere, A; Devlin, Y; Diels, M; Dokoupil, K; Donald, S; Evans, S; Fasan, I; Ferguson, C; Ford, S; Forga, M; Gallo, G; Grünert, S C; Heddrich-Ellerbrok, M; Heidenborg, C; Jonkers, C; Lefebure, K; Luyten, K; MacDonald, A; Meyer, U; Micciche, A; Müller, E; Portnoi, P; Ripley, S; Robert, M; Robertson, L V; Rosenbaum-Fabian, S; Sahm, K; Schultz, S; Singleton, K; Sjöqvist, E; Stoelen, L; Terry, A; Thompson, S; Timmer, C; Vande Kerckhove, K; van der Ploeg, L; Van Driessche, M; van Rijn, M.
Afiliação
  • Adam S; Royal Hospital for Sick Children, Glasgow, UK.
  • Akroyd R; National Metabolic Service, Starship Children's Health and Auckland City Hospital, Auckland, New Zealand.
  • Bernabei S; Ospedale pediatrico Bambino Gesù, Rome, Italy.
  • Bollhalder S; UniversitätsSpital Zürich, Switzerland.
  • Boocock S; University Hospitals Birmingham NHS Foundation Trust, UK.
  • Burlina A; Division of Inherited Metabolic Diseases, Reference Centre Expanded Newborn Screening, Department of Pediatrics, University Hospital, Padova, Italy.
  • Coote T; National Metabolic Service, Starship Children's Health and Auckland City Hospital, Auckland, New Zealand.
  • Corthouts K; University Hospitals Leuven, Center of Metabolic Diseases, Belgium.
  • Dalmau J; Hospital La Fe, Valencia, Spain.
  • Dawson S; Royal Hospital for Sick Children Edinburgh, UK.
  • Defourny S; Hôpital Universitaire des Enfants, Reine fabiola, Bruxelles, Belgium.
  • De Meyer A; Center of Metabolic Diseases, University Hospital, Antwerp, Belgium.
  • Desloovere A; Universitair Ziekenhuis Gent, Belgium.
  • Devlin Y; Royal Victoria Hospital, Newcastle, UK.
  • Diels M; University Hospitals Leuven, Center of Metabolic Diseases, Belgium.
  • Dokoupil K; Dr. von Hauner Children's Hospital, Munich, Germany.
  • Donald S; Addenbrookes, Cambridge, UK.
  • Evans S; Birmingham Children's Hospital, Birmingham, UK.
  • Fasan I; Division of Inherited Metabolic Diseases, Reference Centre Expanded Newborn Screening, Department of Pediatrics, University Hospital, Padova, Italy.
  • Ferguson C; Royal Victoria Hospital, Newcastle, UK.
  • Ford S; North Bristol NHS Trust Southmead and Frenchay, UK.
  • Forga M; Hospital Clinic Barcelona, Spain.
  • Gallo G; Ospedale pediatrico Bambino Gesù, Rome, Italy.
  • Grünert SC; University Children's Hospital Freiburg, Germany.
  • Heddrich-Ellerbrok M; Universitätsklinikum Hamburg-Eppendorf, Germany.
  • Heidenborg C; Karolinska University Hospital Stockholm, Sweden.
  • Jonkers C; Academic Medical Hospital, Amsterdam, Netherlands.
  • Lefebure K; Royal Melbourne Hospital, Melbourne, Australia.
  • Luyten K; Center of Metabolic Diseases, University Hospital, Antwerp, Belgium.
  • MacDonald A; Birmingham Children's Hospital, Birmingham, UK. Electronic address: anita.macdonald@bch.nhs.uk.
  • Meyer U; Clinic of Paediatric Kidney, Liver- and Metabolic Diseases Medical School Hannover, Germany.
  • Micciche A; St Thomas' Hospital, London, UK.
  • Müller E; Children's Hospital Heidelberg, Germany.
  • Portnoi P; Galactosemia Support Group, UK.
  • Ripley S; Salford Royal, Manchester, UK.
  • Robert M; Hôpital Universitaire des Enfants, Reine fabiola, Bruxelles, Belgium.
  • Robertson LV; University Hospitals Birmingham NHS Foundation Trust, UK.
  • Rosenbaum-Fabian S; University Children's Hospital Freiburg, Germany.
  • Sahm K; Children's Hospital Heidelberg, Germany.
  • Schultz S; Universitätsklinikum Hamburg-Eppendorf, Germany.
  • Singleton K; University Hospital of Wales, Cardiff, UK.
  • Sjöqvist E; Children's Hospital, University Hospital Skåne, Sweden.
  • Stoelen L; Oslo University Hospital Rikshospitalet, Norway.
  • Terry A; Alderhey Children's Hospital, Liverpool, UK.
  • Thompson S; Children's Hospital, Westmead, Sydney, Australia.
  • Timmer C; UMC Utrecht, Netherlands.
  • Vande Kerckhove K; University Hospitals Leuven, Center of Metabolic Diseases, Belgium.
  • van der Ploeg L; University Hospital Maastricht, Netherlands.
  • Van Driessche M; Universitair Ziekenhuis Gent, Belgium.
  • van Rijn M; University of Groningen, University Medical Center Groningen, Netherlands.
Mol Genet Metab ; 115(1): 23-6, 2015 May.
Article em En | MEDLINE | ID: mdl-25873073
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.
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Texto completo: 1 Base de dados: MEDLINE Assunto principal: Dieta / Galactose / Galactosemias Idioma: En Ano de publicação: 2015 Tipo de documento: Article

Texto completo: 1 Base de dados: MEDLINE Assunto principal: Dieta / Galactose / Galactosemias Idioma: En Ano de publicação: 2015 Tipo de documento: Article