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Savi R Shishkov
Savi R Shishkov
Department of Endocrinology, Medical University of Varna, Clinic of Endocrinology, UMHAT “Sveta Marina”, Varna, Bulgaria
Division of Endocrinology, Department of Medicine, Leiden University Medical Center, Leiden, the Netherlands
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Division of Endocrinology, Department of Medicine, Leiden University Medical Center, Leiden, the Netherlands
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Luigi Tuccillo
Luigi Tuccillo
Division of Endocrinology, Department of Medicine, Leiden University Medical Center, Leiden, the Netherlands
Università “Federico II” di Napoli, Dipartimento di Medicina Clinica e Chirurgia, Sezione di Endocrinologia, Naples, Italy
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Università “Federico II” di Napoli, Dipartimento di Medicina Clinica e Chirurgia, Sezione di Endocrinologia, Naples, Italy
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Violeta M Iotova
Violeta M Iotova
Department of Pediatrics, Medical University of Varna, First Pediatric Clinic with Intensive Care, UMHAT “Sveta Marina”, Varna, Bulgaria
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Rosario Pivonello
Rosario Pivonello
Università “Federico II” di Napoli, Dipartimento di Medicina Clinica e Chirurgia, Sezione di Endocrinologia, Naples, Italy
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Iris CM Pelsma
Iris CM Pelsma
Division of Endocrinology, Department of Medicine, Leiden University Medical Center, Leiden, the Netherlands
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Alberto M Pereira
Alberto M Pereira
Division of Endocrinology, Department of Medicine, Leiden University Medical Center, Leiden, the Netherlands
Department of Endocrinology and Metabolism, Amsterdam Gastroenterology Endocrinology & Metabolism, Amsterdam University Medical Centre, University of Amsterdam, Amsterdam, Netherlands
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Department of Endocrinology and Metabolism, Amsterdam Gastroenterology Endocrinology & Metabolism, Amsterdam University Medical Centre, University of Amsterdam, Amsterdam, Netherlands
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Nienke R Biermasz
Nienke R Biermasz
Division of Endocrinology, Department of Medicine, Leiden University Medical Center, Leiden, the Netherlands
Adult Chair of MTG Pituitary of Endo-ERN
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Adult Chair of MTG Pituitary of Endo-ERN
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the Endo-ERN Reference Centers of the Main Thematic Group: Hypothalamic and Pituitary Conditions, Endo-ERN Pituitary Transition of Care Study Group
the Endo-ERN Reference Centers of the Main Thematic Group: Hypothalamic and Pituitary Conditions, Endo-ERN Pituitary Transition of Care Study Group
the Endo-ERN Reference Centers of the Main Thematic Group: Hypothalamic and Pituitary Conditions, Endo-ERN Pituitary Transition of Care Study Group
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(Endo-ERN) ( 9 ) is to lay the foundations for standardization of care through guideline conformity. Therefore, the aim of this study was to map the current clinical practice regarding transition of care across reference centers (RCs) of Endo-ERN, which
Amir H Zamanipoor Najafabadi
Amir H Zamanipoor Najafabadi
Department of Ophthalmology, Leiden University Medical Center, Leiden, The Netherlands
Department of Medicine, Division of Endocrinology and Centre for Endocrine Tumors, Leiden University Medical Centre, Leiden, The Netherlands
Department of Neurosurgery, University Neurosurgical Centre Holland (UNCH), Leiden University Medical Centre, Haaglanden Medical Centre and Haga Teaching Hospitals, Leiden and The Hague, The Netherlands
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Department of Medicine, Division of Endocrinology and Centre for Endocrine Tumors, Leiden University Medical Centre, Leiden, The Netherlands
Department of Neurosurgery, University Neurosurgical Centre Holland (UNCH), Leiden University Medical Centre, Haaglanden Medical Centre and Haga Teaching Hospitals, Leiden and The Hague, The Netherlands
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Merel van der Meulen
Merel van der Meulen
Department of Medicine, Division of Endocrinology and Centre for Endocrine Tumors, Leiden University Medical Centre, Leiden, The Netherlands
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Ana Luisa Priego Zurita
Ana Luisa Priego Zurita
Department of Medicine, Division of Endocrinology and Centre for Endocrine Tumors, Leiden University Medical Centre, Leiden, The Netherlands
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S Faisal Ahmed
S Faisal Ahmed
Chair of Work Package of E-Health & ICT of Endo-ERN, Developmental Endocrinology Research Group, School of Medicine, Dentistry & Nursing, University of Glasgow and Office for Rare Conditions, Royal Hospital for Children & Queen Elizabeth University Hospital, Glasgow, UK
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Wouter R van Furth
Wouter R van Furth
Department of Ophthalmology, Leiden University Medical Center, Leiden, The Netherlands
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Evangelia Charmandari
Evangelia Charmandari
Pediatric Chair Main Thematic Group 6 Pituitary of Endo-ERN, Division of Endocrinology, Metabolism and Diabetes, First Department of Pediatrics, National and Kapodistrian University of Athens Medical School, ‘Aghia Sophia’ Children’s Hospital, Athens, Greece
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Olaf Hiort
Olaf Hiort
Pediatric Chair and Deputy Coordinator of Endo-ERN, Division of Pediatric Endocrinology and Diabetes, Department of Pediatrics and Adolescent Medicine, University of Lübeck, Lübeck, Germany
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Alberto M Pereira
Alberto M Pereira
Adult Chair and Coordinator of Endo-ERN, Department of Endocrinology and Metabolism, Amsterdam University Medical Center, Amsterdam, The Netherlands
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Mehul Dattani
Mehul Dattani
London Centre for Pediatric Endocrinology and Diabetes at Great Ormond Street Children's Hospital and University College London Hospitals, London, UK
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Diana Vitali
Diana Vitali
SOD ITALIA (Italian Organization for Septo Optic Dysplasia and other Neuroendocrine Disorders), European Patient Advocacy Group, Rome, Italy
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Johan P de Graaf
Johan P de Graaf
Dutch Pituitary Foundation, European Patient Advocacy Group, Nijkerk, The Netherlands
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Nienke R Biermasz
Nienke R Biermasz
Adult Chair Main Thematic Group 6 Pituitary of Endo-ERN, Department of Medicine, Division of Endocrinology and Centre for Endocrine Tumors, Leiden University Medical Centre, Leiden, The Netherlands
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Introduction The European Reference Network on Rare Endocrine Conditions (Endo-ERN) aims to organize high-quality healthcare throughout Europe for patients with rare endocrine conditions. Through intensive collaboration between its reference
I M A A van Roessel
I M A A van Roessel
Department of Pediatric Endocrinology, Wilhelmina Children’s Hospital, University Medical Center Utrecht, Utrecht, The Netherlands
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J P de Graaf
J P de Graaf
Dutch Pituitary Foundation, Nijkerk, The Netherlands
Department of Endocrinology, Leiden University Medical Center, Leiden, The Netherlands
Endo-ERN European Reference Network on Rare endocrine conditions
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Department of Endocrinology, Leiden University Medical Center, Leiden, The Netherlands
Endo-ERN European Reference Network on Rare endocrine conditions
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N R Biermasz
N R Biermasz
Department of Endocrinology, Leiden University Medical Center, Leiden, The Netherlands
Endo-ERN European Reference Network on Rare endocrine conditions
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Endo-ERN European Reference Network on Rare endocrine conditions
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E Charmandari
E Charmandari
Division of Endocrinology, Metabolism and Diabetes, First Department of Pediatrics, National and Kapodistrian University of Athens Medical School, Aghia Sophia Children's Hospital, Athens, Greece
Division of Endocrinology and Metabolism, Center for Clinical, Experimental Surgery and Translational Research, Biomedical Research Foundation of the Academy of Athens, Athens, Greece
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Division of Endocrinology and Metabolism, Center for Clinical, Experimental Surgery and Translational Research, Biomedical Research Foundation of the Academy of Athens, Athens, Greece
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H M van Santen
H M van Santen
Department of Pediatric Endocrinology, Wilhelmina Children’s Hospital, University Medical Center Utrecht, Utrecht, The Netherlands
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especially important with the increasing role of shared decision-making in clinical care over the last years and the inclusion of patient advocacy groups in networks like the European Reference network on Rare Endocrine Conditions (Endo-ERN). This has
S R Ali
S R Ali
Developmental Endocrinology Research Group, School of Medicine, Dentistry & Nursing, University of Glasgow, Glasgow, UK
Office for Rare Conditions, Royal Hospital for Children & Queen Elizabeth University Hospital, Glasgow, UK
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Office for Rare Conditions, Royal Hospital for Children & Queen Elizabeth University Hospital, Glasgow, UK
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J Bryce
J Bryce
Office for Rare Conditions, Royal Hospital for Children & Queen Elizabeth University Hospital, Glasgow, UK
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A L Priego-Zurita
A L Priego-Zurita
Department of Medicine, Division of Endocrinology, Leiden University Medical Center, Leiden, the Netherlands
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M Cherenko
M Cherenko
Department of Medicine, Division of Endocrinology, Leiden University Medical Center, Leiden, the Netherlands
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C Smythe
C Smythe
Office for Rare Conditions, Royal Hospital for Children & Queen Elizabeth University Hospital, Glasgow, UK
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T M de Rooij
T M de Rooij
Department of Medicine, Division of Endocrinology, Leiden University Medical Center, Leiden, the Netherlands
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M Cools
M Cools
Department of Internal Medicine and Paediatrics, Ghent University, Belgium
Department of Paediatric Endocrinology, Ghent University Hospital, Ghent, Belgium
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Department of Paediatric Endocrinology, Ghent University Hospital, Ghent, Belgium
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T Danne
T Danne
Diabetes Center AUF DER BULT, Hannover, Germany
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H Katugampola
H Katugampola
UCL GOS Institute of Child Health, London
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O M Dekkers
O M Dekkers
Department of Medicine, Division of Endocrinology, Leiden University Medical Center, Leiden, the Netherlands
Department of Medicine & Clinical Epidemiology, Leiden University Medical Centre, Leiden, the Netherlands
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Department of Medicine & Clinical Epidemiology, Leiden University Medical Centre, Leiden, the Netherlands
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O Hiort
O Hiort
Division of Paediatric Endocrinology and Diabetes, Department of Paediatrics and Adolescent Medicine, University of Lübeck, Lübeck, Germany
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A Linglart
A Linglart
AP-HP, Université Paris Saclay, INSERM, Bicêtre Paris Saclay Hospital, le Kremlin Bicêtre, France
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I Netchine
I Netchine
Sorbonne Université, Inserm, Centre de recherche Sainte Antoine, APHP, Hôpital des Enfants Armand Trousseau, Paris, France
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A Nordenstrom
A Nordenstrom
Pediatric Endocrinology, Karolinska Institutet, Karolinska University Hospital, Stockholm, Sweden
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P Attila
P Attila
Clinical Genetics and Endocrinology Laboratory, Department of Laboratory Medicine, Semmelweis University, Budapest, Hungary
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L Persani
L Persani
Department of Endocrine and Metabolic Diseases, Istituto Auxologico Italiano IRCCS, Milan, Italy
Department of Medical Biotechnology and Translational Medicine, University of Milan, Milan, Italy
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Department of Medical Biotechnology and Translational Medicine, University of Milan, Milan, Italy
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N Reisch
N Reisch
Endokrinologie, Medizinische Klinik Innenstadt und Poliklinik IV, Klinikum der Universität München, Munich, Germany
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A Smyth
A Smyth
Office for Rare Conditions, Royal Hospital for Children & Queen Elizabeth University Hospital, Glasgow, UK
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Z Sumnik
Z Sumnik
Department of Pediatrics, Motol University Hospital and 2nd Faculty of Medicine, Charles University, Prague, Czech Republic
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D Taruscio
D Taruscio
National Centre for Rare Diseases, Istituto Superiore di Sanità, Rome, Italy
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W E Visser
W E Visser
Erasmus Medical Centre, Department of Internal Medicine, Academic Centre for Thyroid Diseases, Rotterdam, the Netherlands
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A M Pereira
A M Pereira
Department of Endocrinology and Metabolism, Amsterdam University Medical Centres, University of Amsterdam, Amsterdam, the Netherlands
Amsterdam Gastroenterology Endocrinology and Metabolism, Amsterdam, the Netherlands
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Amsterdam Gastroenterology Endocrinology and Metabolism, Amsterdam, the Netherlands
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N M Appelman-Dijkstra
N M Appelman-Dijkstra
Department of Medicine, Division of Endocrinology, Leiden University Medical Center, Leiden, the Netherlands
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S F Ahmed
S F Ahmed
Developmental Endocrinology Research Group, School of Medicine, Dentistry & Nursing, University of Glasgow, Glasgow, UK
Office for Rare Conditions, Royal Hospital for Children & Queen Elizabeth University Hospital, Glasgow, UK
Department of Medicine, Division of Endocrinology, Leiden University Medical Center, Leiden, the Netherlands
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Office for Rare Conditions, Royal Hospital for Children & Queen Elizabeth University Hospital, Glasgow, UK
Department of Medicine, Division of Endocrinology, Leiden University Medical Center, Leiden, the Netherlands
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-REC, https://eurreb.eu/registries/e-rec/ ) which is a simple registry that can facilitate voluntary electronic surveillance of any activity within a network of centres such as the European Reference Network for rare endocrine conditions (Endo-ERN). These
Kirsten Davidse
Kirsten Davidse
Department of Internal Medicine-Endocrinology, Erasmus University Medical Centre, Rotterdam, the Netherlands
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Anneloes van Staa
Anneloes van Staa
Research Centre Innovations in Care, Rotterdam University of Applied Sciences, Rotterdam, the Netherlands
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Wanda Geilvoet
Wanda Geilvoet
Department of Internal Medicine-Endocrinology, Erasmus University Medical Centre, Rotterdam, the Netherlands
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Judith P van Eck
Judith P van Eck
Department of Paediatric Endocrinology, Erasmus University Medical Centre, Rotterdam, the Netherlands
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Karlijn Pellikaan
Karlijn Pellikaan
Department of Internal Medicine-Endocrinology, Erasmus University Medical Centre, Rotterdam, the Netherlands
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Janneke Baan
Janneke Baan
Department of Internal Medicine-Endocrinology, Erasmus University Medical Centre, Rotterdam, the Netherlands
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Anita C S Hokken-Koelega
Anita C S Hokken-Koelega
Department of Paediatric Endocrinology, Erasmus University Medical Centre, Rotterdam, the Netherlands
Academic Centre for Growth, Erasmus University Medical Centre, Rotterdam, the Netherlands
Dutch Growth Research Foundation, Rotterdam, the Netherlands
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Academic Centre for Growth, Erasmus University Medical Centre, Rotterdam, the Netherlands
Dutch Growth Research Foundation, Rotterdam, the Netherlands
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Erica L T van den Akker
Erica L T van den Akker
Department of Paediatric Endocrinology, Erasmus University Medical Centre, Rotterdam, the Netherlands
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Theo Sas
Theo Sas
Department of Paediatric Endocrinology, Erasmus University Medical Centre, Rotterdam, the Netherlands
Diabeter, National Diabetes Care and Research Centre, Rotterdam, the Netherlands
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Diabeter, National Diabetes Care and Research Centre, Rotterdam, the Netherlands
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Sabine E Hannema
Sabine E Hannema
Department of Paediatric Endocrinology, Erasmus University Medical Centre, Rotterdam, the Netherlands
Department of Paediatrics, Leiden University Medical Centre, Leiden, the Netherlands
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Department of Paediatrics, Leiden University Medical Centre, Leiden, the Netherlands
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Aart Jan van der Lely
Aart Jan van der Lely
Department of Internal Medicine-Endocrinology, Erasmus University Medical Centre, Rotterdam, the Netherlands
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Laura C G de Graaff
Laura C G de Graaff
Department of Internal Medicine-Endocrinology, Erasmus University Medical Centre, Rotterdam, the Netherlands
Academic Centre for Growth, Erasmus University Medical Centre, Rotterdam, the Netherlands
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Academic Centre for Growth, Erasmus University Medical Centre, Rotterdam, the Netherlands
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. Funding This publication has been supported by Endo-ERN, which is co-funded by the European Union’s 3rd Health Programme (CHAFEA Framework Partnership Agreement No 739527). Statement of ethics The study was approved by the Medical Ethics Review
Lukas Plachy
Lukas Plachy
Department of Pediatrics, Second Faculty of Medicine, Charles University and Motol University Hospital, V Úvalu, Prague, Czech Republic
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Petra Dusatkova
Petra Dusatkova
Department of Pediatrics, Second Faculty of Medicine, Charles University and Motol University Hospital, V Úvalu, Prague, Czech Republic
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Klara Maratova
Klara Maratova
Department of Pediatrics, Second Faculty of Medicine, Charles University and Motol University Hospital, V Úvalu, Prague, Czech Republic
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Shenali Anne Amaratunga
Shenali Anne Amaratunga
Department of Pediatrics, Second Faculty of Medicine, Charles University and Motol University Hospital, V Úvalu, Prague, Czech Republic
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Dana Zemkova
Dana Zemkova
Department of Pediatrics, Second Faculty of Medicine, Charles University and Motol University Hospital, V Úvalu, Prague, Czech Republic
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Vit Neuman
Vit Neuman
Department of Pediatrics, Second Faculty of Medicine, Charles University and Motol University Hospital, V Úvalu, Prague, Czech Republic
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Stanislava Kolouskova
Stanislava Kolouskova
Department of Pediatrics, Second Faculty of Medicine, Charles University and Motol University Hospital, V Úvalu, Prague, Czech Republic
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Barbora Obermannova
Barbora Obermannova
Department of Pediatrics, Second Faculty of Medicine, Charles University and Motol University Hospital, V Úvalu, Prague, Czech Republic
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Marta Snajderova
Marta Snajderova
Department of Pediatrics, Second Faculty of Medicine, Charles University and Motol University Hospital, V Úvalu, Prague, Czech Republic
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Zdenek Sumnik
Zdenek Sumnik
Department of Pediatrics, Second Faculty of Medicine, Charles University and Motol University Hospital, V Úvalu, Prague, Czech Republic
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Jan Lebl
Jan Lebl
Department of Pediatrics, Second Faculty of Medicine, Charles University and Motol University Hospital, V Úvalu, Prague, Czech Republic
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Stepanka Pruhova
Stepanka Pruhova
Department of Pediatrics, Second Faculty of Medicine, Charles University and Motol University Hospital, V Úvalu, Prague, Czech Republic
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HL Dessens AB Gawlik A , et al. Pubertal induction and transition to adult sex hormone replacement in patients with congenital pituitary or gonadal reproductive hormone deficiency: an Endo-ERN clinical practice guideline . European Journal of
