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International practices in the dietary management of fructose 1-6 biphosphatase deficiency.

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作者: A,Pinto [1] ; M,Alfadhel [2] ; R,Akroyd [3] ; Y,Atik Altınok [4] ; S M,Bernabei [5] ; L,Bernstein [6] ; G,Bruni [7] ; G,Caine [8] ; E,Cameron [9] ; R,Carruthers [10] ; B,Cochrane [11] ; A,Daly [12] ; F,de Boer [13] ; S,Delaunay [14] ; A,Dianin [15] ; M,Dixon [16] ; E,Drogari [17] ; S,Dubois [18] ; S,Evans [12] ; J,Gribben [19] ; G,Gugelmo [15] ; C,Heidenborg [20] ; I,Hunjan [21] ; I L,Kok [22] ; B,Kumru [23] ; A,Liguori [5] ; D,Mayr [24] ; E,Megdad [25] ; U,Meyer [26] ; R B,Oliveira [27] ; A,Pal [28] ; A,Pozzoli [29] ; R,Pretese [30] ; J C,Rocha [31] ; S,Rosenbaum-Fabian [32] ; J,Serrano-Nieto [33] ; E,Sjoqvist [34] ; C,Timmer [35] ; L,White [36] ; T,van den Hurk [37] ; M,van Rijn [38] ; H,Zweers [39] ; M,Ziadlou [22] ; A,MacDonald [13]
作者单位: Birmingham Women's and Children's Hospital, Birmingham, UK. alex.pinto@nhs.net. [1] King Abdullah International Medical Research Centre, King Saud bin Abdulaziz University for Health Sciences, Genetic Division, Department of Pediatrics, King Abdulaziz Medical City, Ministry of National Guard-Health Affairs (NGHA), Riyadh, Saudi Arabia. [2] National Metabolic Service, Starship Child Health and Auckland City Hospital, Auckland, New Zealand. [3] Pediatric Metabolism Department, Ege University Medical Faculty, Izmir, Turkey. [4] Children's Hospital Bambino Gesù, Division of Artificial Nutrition, Rome, Italy. [5] IMD Nutrition, Children's Hospital Colorado, Aurora, CO, USA. [6] Azienda Ospedaliero Universitaria Meyer, Florence, Italy. [7] Mid Yorks NHS Trust, Yorkshire, UK. [8] Bristol Royal Hospital for Children, University Hospitals Bristol NHS Foundation Trust, Bristol, UK. [9] Charles Dent Metabolic Unit, National Hospital for Neurology and Neurosurgery, London, UK. [10] Royal Hospital for Children, Glasgow, Scotland, UK. [11] Birmingham Women's and Children's Hospital, Birmingham, UK. [12] Division of Metabolic Diseases, Beatrix Children's Hospital, University Medical Center Groningen, PO BOX 30.001, 9700 RB, Groningen, The Netherlands. [13] Centre hospitalier Universitaire de Rennes, Rennes, France. [14] Department of Pediatrics, Regional Centre for Newborn Screening, Diagnosis and Treatment of Inherited Metabolic Diseases and Congenital Endocrine Diseases, University Hospital of Verona, Verona, Italy. [15] Great Ormond Street Hospital for Children NHS Foundation Trust, London, UK. [16] Unit of Metabolic Diseases, Choremio Research Laboratory, 1st Department of Paediatrics, University of Athens Medical School, "Aghia Sophia" Children's Hospital, Athens, Greece. [17] Centre de référence des maladies héréditaires du métabolisme, Hôpital Necker Enfants Malades, Paris, France. [18] Evelina London Children's Hospital, Guy's and St Thomas' NHS Foundation Trust, London, UK. [19] Karolinska University Hospital, Stockholm, Sweden. [20] Bradford Teaching Hospital NHS Foundation Trust, Bradford, UK. [21] Wilhelmina Children's Hospital, University Medical Centre Utrecht, Utrecht, The Netherlands. [22] Department of Nutrition and Diet, Gaziantep Cengiz Gökçek Obstetrics and Pediatric Hospital, Gaziantep, Turkey. [23] Ernährungsmedizinische Beratung, Universitätsklinik für Kinder- und Jugendheilkunde, Salzburg, Austria. [24] Metabolic Nutrition Clinics. King Faisal Specialist Hospital and Research Centre, Riyadh, Saudi Arabia. [25] Clinic of Paediatric Kidney, Liver and Metabolic Diseases, Medical School Hannover, Hannover, Germany. [26] Centro de Referência em Erros Inatos do Metabolismo, Universidade Federal de São Paulo, São Paulo, Brazil. [27] Akademiska children's hospital, Uppsala, Sweden. [28] Guglielmo Da Saliceto's Hospital, Piacenza, Italy. [29] Fondazione MBBM, San Gerardo Hospital, Monza, Italy. [30] Centro de Referência de Doenças Hereditárias do Metabolismo, Centro Hospitalar do Porto - CHP, Porto, Portugal. [31] Centro de Genética Médica, Centro Hospitalar do Porto (CHP), Porto, Portugal. [32] Faculdade de Ciências da Saúde, Universidade Fernando Pessoa, Porto, Portugal. [33] Centre for Health Technology and Services Research (CINTESIS), Porto, Portugal. [34] University Children's Hospital Freiburg, Freiburg, Germany. [35] Hospital Regional Universitario Málaga, Málaga, Spain. [36] Children's Hospital, University Hospital, Lund, Sweden. [37] Academic Medical Center Amsterdam, Amsterdam, Netherlands. [38] Sheffield Children's Hospital, Sheffield, UK. [39] Radboud University Medical Centre Nijmegen, Nijmegen, The Netherlands. [40] Nutrition Department at International campus, Shahid Sadoughi University of Medical Sciences, Yazd, Iran. [41]
DOI 10.1186/s13023-018-0760-3
PMID 29370874
发布时间 2022-03-31
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Orphanet journal of rare diseases

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