S C Clement
S C Clement
Department of Pediatrics, Emma Children’s Hospital, Amsterdam University Medical Center, University of Amsterdam, Amsterdam, The Netherlands
Department of Pediatric Endocrinology, Wilhelmina Children’s Hospital/ University Medical Center Utrecht, Utrecht, The Netherlands
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Department of Pediatric Endocrinology, Wilhelmina Children’s Hospital/ University Medical Center Utrecht, Utrecht, The Netherlands
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W E Visser
W E Visser
Academic Center For Thyroid Disease, Department of Internal Medicine, Erasmus Medical Center, Rotterdam, The Netherlands
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C A Lebbink
C A Lebbink
Department of Pediatric Endocrinology, Wilhelmina Children’s Hospital/ University Medical Center Utrecht, Utrecht, The Netherlands
Princess Máxima Center for Pediatric Oncology, Utrecht, The Netherlands
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Princess Máxima Center for Pediatric Oncology, Utrecht, The Netherlands
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D Albano
D Albano
Department of Nuclear Medicine, University of Brescia and Spedali Civili of Brescia, Brescia, Italy
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H L Claahsen-van der Grinten
H L Claahsen-van der Grinten
Department of Pediatrics, Radboud University Medical Center, Amalia Children's Hospital, Nijmegen, The Netherlands
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A Czarniecka
A Czarniecka
The Oncologic and Reconstructive Surgery Clinic, M. Sklodowska-Curie National Research Institute of Oncology Gliwice Branch, Gliwice, Poland
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R P Dias
R P Dias
Department of Endocrinology and Diabetes, Birmingham Children’s Hospital, Birmingham Women’s, and Children’s NHS Foundation Trust, Birmingham, UK
Institute of Metabolism and Systems Research, College of Medical and Dental Sciences, University of Birmingham, Birmingham, UK
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Institute of Metabolism and Systems Research, College of Medical and Dental Sciences, University of Birmingham, Birmingham, UK
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M P Dierselhuis
M P Dierselhuis
Princess Máxima Center for Pediatric Oncology, Utrecht, The Netherlands
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I Dzivite-Krisane
I Dzivite-Krisane
Department of Pediatric Endocrinology, Children's Clinical University Hospital, Riga, Latvia
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R Elisei
R Elisei
Endocrine Unit, Department of Clinical and Experimental Medicine, University of Pisa, Pisa, Italy
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A Garcia-Burillo
A Garcia-Burillo
Nuclear Medicine Department, Vall d'Hebron University Hospital, Barcelona, Spain
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L Izatt
L Izatt
Department of Clinical Genetics, Guy's and St Thomas’ NHS Foundation Trust, London, UK
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C Kanaka-Gantenbein
C Kanaka-Gantenbein
Division of Endocrinology, Diabetes, and Metabolism, First Department of Pediatrics National and Kapodistrian University of Athens Medical School, Aghia Sophia Children's Hospital, Athens, Greece
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H Krude
H Krude
Institute of Experimental Pediatric Endocrinology, Charité - Universitätsmedizin, Berlin, Germany
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L Lamartina
L Lamartina
Department of Endocrine Oncology, Gustave Roussy, Villejuif, France
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K Lorenz
K Lorenz
Department of Visceral, Vascular and Endocrine Surgery, Martin Luther University Halle-Wittenberg, Halle (Saale), Germany
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M Luster
M Luster
Department of Nuclear Medicine, University Hospital Marburg, Marburg, Germany
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R Navardauskaitė
R Navardauskaitė
Department of Endocrinology, Lithuanian University of Health Sciences, Kaunas, Lithuania
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M Negre Busó
M Negre Busó
Nuclear Medicine Service - Institut de diagnòstic per la Imatge, Hospital Universitari de Girona Dr. Josep Trueta, Girona, Spain
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K Newbold
K Newbold
Thyroid Therapy Unit, The Royal Marsden NHS Foundation Trust Hospital, London, UK
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R P Peeters
R P Peeters
Academic Center For Thyroid Disease, Department of Internal Medicine, Erasmus Medical Center, Rotterdam, The Netherlands
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G Pellegriti
G Pellegriti
Endocrinology, Endocrinology Division, Garibaldi-Nesima Medical Center, Catania, Italy
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A Piccardo
A Piccardo
Department of Nuclear Medicine, EO Ospedali Galliera, Genoa, Italy
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A L Priego
A L Priego
Department of Medicine, Division of Endocrinology, Leiden, University medical Center, Leiden, The Netherlands
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A Redlich
A Redlich
Pediatric Oncology Department, Otto von Guericke University Children's Hospital, Magdeburg, Germany
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L de Sanctis
L de Sanctis
Regina Margherita Children Hospital - Department of Public Health and Pediatric Sciences, University of Torino, Torino, Italy
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M Sobrinho-Simões
M Sobrinho-Simões
University Hospital of São João, Medical Faculty and Institute of Molecular Pathology and Immunology, University of Porto, Porto, Portugal
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A S P van Trotsenburg
A S P van Trotsenburg
Department of Pediatric Endocrinology, Emma Children’s Hospital, Amsterdam University Medical Center, University of Amsterdam, Amsterdam, The Netherlands
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F A Verburg
F A Verburg
Department of Radiology & Nuclear Medicine, Erasmus MC Rotterdam, Rotterdam, The Netherlands
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M Vriens
M Vriens
Department of Endocrine Surgery, University Medical Center Utrecht, Utrecht, The Netherlands
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T P Links
T P Links
Department of Endocrinology, University Medical Center Groningen, Groningen, The Netherlands
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S F Ahmed
S F Ahmed
Endocrinology, Endocrinology Division, Garibaldi-Nesima Medical Center, Catania, Italy
Developmental Endocrinology Research Group, Royal Hospital for Children, University of Glasgow, Glasgow, UK
Office for Rare Conditions, University of Glasgow, Glasgow, UK
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Developmental Endocrinology Research Group, Royal Hospital for Children, University of Glasgow, Glasgow, UK
Office for Rare Conditions, University of Glasgow, Glasgow, UK
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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
Princess Máxima Center for Pediatric Oncology, Utrecht, The Netherlands
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Princess Máxima Center for Pediatric Oncology, Utrecht, The Netherlands
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European network was started (initiative: T.P. Links). 2017: Dekker et al. conducted a survey on the care for pediatric DTC in different European countries and concluded that national registries for pediatric DTC are limited, and treatment is very
Samira M Sadowski
Samira M Sadowski
Thoracic and Endocrine Surgery, University Hospitals of Geneva, Geneva, Switzerland
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Emanuel Christ
Emanuel Christ
Department of Endocrinology, Diabetes and Metabolism, University Hospital of Basel, Basel, Switzerland
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Benoit Bédat
Benoit Bédat
Thoracic and Endocrine Surgery, University Hospitals of Geneva, Geneva, Switzerland
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Attila Kollár
Attila Kollár
Department of Medical Oncology, Inselspital, University of Bern, Bern, Switzerland
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Wolfram Karenovics
Wolfram Karenovics
Thoracic and Endocrine Surgery, University Hospitals of Geneva, Geneva, Switzerland
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Aurel Perren
Aurel Perren
Institute of Pathology, University of Bern, Bern, Switzerland
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Frédéric Triponez
Frédéric Triponez
Thoracic and Endocrine Surgery, University Hospitals of Geneva, Geneva, Switzerland
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on behalf of the SwissNET registry
on behalf of the SwissNET registry
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therapy are not standard of care. SwissNET is a prospective ongoing nationwide registry of patients with NET of all organs. Its goal is to collect data from NET cases in order to provide quality assessments, to advance knowledge and to establish standard
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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-border collaboration is needed in the form of expert (virtual) consultation for rare and complex cases and in the form of registries to collect high-quality data. This might especially hold true for ultra-rare cases for which even expert centers lack extensive
Wolfgang Högler
Wolfgang Högler
Department of Paediatrics and Adolescent Medicine, Johannes Kepler University Linz, Linz, Austria
Institute of Metabolism and Systems Research, University of Birmingham, Birmingham, UK
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Institute of Metabolism and Systems Research, University of Birmingham, Birmingham, UK
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Agnès Linglart
Agnès Linglart
AP-HP, Hôpital Bicêtre Paris Saclay, service d’endocrinologie et diabète de l’enfant, DMU 3 SEA, centre de référence des maladies rares du métabolisme du calcium et du phosphate, filière OSCAR; Université de Paris-Saclay INSERM U1185, Hôpital Bicêtre, Le Kremlin-Bicêtre, France
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Anna Petryk
Anna Petryk
Alexion, AstraZeneca Rare Disease, Boston, Massachusetts, USA
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Priya S Kishnani
Priya S Kishnani
Duke University Medical Center, Durham, North Carolina, USA
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Lothar Seefried
Lothar Seefried
University of Würzburg, Würzburg, Germany
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Shona Fang
Shona Fang
Alexion, AstraZeneca Rare Disease, Boston, Massachusetts, USA
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Cheryl Rockman-Greenberg
Cheryl Rockman-Greenberg
University of Manitoba, Winnipeg, Manitoba, Canada
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Keiichi Ozono
Keiichi Ozono
Osaka University, Suita, Osaka, Japan
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Kathryn Dahir
Kathryn Dahir
Vanderbilt University Medical Center, Nashville, Tennessee, USA
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Gabriel Ángel Martos-Moreno
Gabriel Ángel Martos-Moreno
Departments of Pediatrics and Pediatric Endocrinology Hospital Infantil Universitario Niño Jesús, IIS La Princesa, Universidad Autónoma de Madrid, CIBERobn, ISCIII, Madrid, Spain
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HPP may have below-average height but normal weight when compared with the general population ( 3 ). Recent evidence from the Global HPP Registry, a multinational, longitudinal study of patients with HPP, showed that bone deformity, failure to thrive
Sofya Gronskaia
Sofya Gronskaia
Endocrinology Research Centre, Moscow, Russia
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Galina Melnichenko
Galina Melnichenko
Endocrinology Research Centre, Moscow, Russia
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Liudmila Rozhinskaya
Liudmila Rozhinskaya
Endocrinology Research Centre, Moscow, Russia
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Tatiana Grebennikova
Tatiana Grebennikova
Endocrinology Research Centre, Moscow, Russia
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Elizaveta Mamedova
Elizaveta Mamedova
Endocrinology Research Centre, Moscow, Russia
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Ekaterina Pigarova
Ekaterina Pigarova
Endocrinology Research Centre, Moscow, Russia
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Elena Przhialkovskaya
Elena Przhialkovskaya
Endocrinology Research Centre, Moscow, Russia
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Larisa Dzeranova
Larisa Dzeranova
Endocrinology Research Centre, Moscow, Russia
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Ivan Dedov
Ivan Dedov
Endocrinology Research Centre, Moscow, Russia
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Valentin Fadeyev
Valentin Fadeyev
I.M. Sechenov First Moscow State Medical University, Moscow, Russia
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Maria Luisa Brandi
Maria Luisa Brandi
University of Florence, Surgery and Translational Medicine, Piereccaini, Firenze, Italy
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Zhanna Belaya
Zhanna Belaya
Endocrinology Research Centre, Moscow, Russia
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epidemiological information regarding chronic hypoparathyroidism, particularly among the Russian population, we initiated an observational registry study of chronic hypoparathyroidism. This study aimed to evaluate the etiological structure, demographics
Heike Hoyer-Kuhn
Heike Hoyer-Kuhn
Department of Paediatrics, Faculty of Medicine and University Hospital Cologne, University of Cologne, Cologne, Germany
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Angela Huebner
Angela Huebner
Department of Paediatrics, University Children’s Hospital Dresden, Dresden, Germany
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Anette Richter-Unruh
Anette Richter-Unruh
University Children’s Hospital Bochum, Bochum, Nordrhein-Westfalen, Germany
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Markus Bettendorf
Markus Bettendorf
University Children’s Hospital Heidelberg, Heidelberg, Germany
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Tilman Rohrer
Tilman Rohrer
University Children’s Hospital Homburg, Homburg, Germany
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Klaus Kapelari
Klaus Kapelari
University Children’s Hospital Innsbruck, Innsbruck, Austria
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Stefan Riedl
Stefan Riedl
Department of Pediatric, Medical University of Vienna, Vienna, Austria
St.Anna Kinderspital, Medical University of Vienna, Vienna, Austria
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St.Anna Kinderspital, Medical University of Vienna, Vienna, Austria
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Klaus Mohnike
Klaus Mohnike
Department of Biometrics, Otto von Guericke Universität Magdeburg, Magdeburg, Sachsen-Anhalt, Germany
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Helmuth-Günther Dörr
Helmuth-Günther Dörr
University Children’s Hospital Erlangen, Erlangen, Germany
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Friedrich-Wilhelm Roehl
Friedrich-Wilhelm Roehl
Department of Biometrics, Otto von Guericke Universität Magdeburg, Magdeburg, Sachsen-Anhalt, Germany
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Katharina Fink
Katharina Fink
Institute of Epidemiology and Medical Biometry, ZIBMT, University of Ulm, Ulm, Germany
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Reinhard W Holl
Reinhard W Holl
Institute of Epidemiology and Medical Biometry, ZIBMT, University of Ulm, Ulm, Germany
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Joachim Woelfle
Joachim Woelfle
University Children’s Hospital Erlangen, Erlangen, Germany
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were described in a large cohort of children with CAH from the AQUAPE CAH registry ( 4 ). Treatment in classic CAH is necessary to compensate for glucocorticoid and mineralocorticoid deficiencies and also to blunt the ACTH secretion, the major driver
Cristina Lamas
Cristina Lamas
Department of Endocrinology and Nutrition, Complejo Hospitalario Universitario de Albacete, Albacete, Spain
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Elena Navarro
Elena Navarro
Department of Endocrinology and Nutrition, Hospital Universitario Virgen del Rocío, Sevilla, Spain
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Anna Casterás
Anna Casterás
Department of Endocrinology and Nutrition, Hospital Vall d’Hebron, Barcelona, Spain
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Paloma Portillo
Paloma Portillo
Department of Endocrinology and Nutrition, Hospital Clínico Universitario Virgen de la Arrixaca, Murcia, Spain
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Victoria Alcázar
Victoria Alcázar
Department of Endocrinology and Nutrition, Hospital Universitario Severo Ochoa, Leganés, Spain
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María Calatayud
María Calatayud
Department of Endocrinology and Nutrition, Hospital Univeristario Doce de Octubre, Madrid, Spain
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Cristina Álvarez-Escolá
Cristina Álvarez-Escolá
Department of Endocrinology and Nutrition, Hospital Universitario La Paz, Madrid, Spain
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Julia Sastre
Julia Sastre
Department of Endocrinology and Nutrition, Complejo Hospitalario de Toledo, Hospital Virgen de la Salud, Toledo, Spain
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Evangelina Boix
Evangelina Boix
Department of Endocrinology and Nutrition, Hospital General Universitario de Elche, Elche, Spain
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Lluis Forga
Lluis Forga
Department of Endocrinology and Nutrition, Complejo Hospitalario de Navarra, Hospital de Navarra, Pamplona, Spain
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Almudena Vicente
Almudena Vicente
Department of Endocrinology and Nutrition, Complejo Hospitalario de Toledo, Hospital Virgen de la Salud, Toledo, Spain
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Josep Oriola
Josep Oriola
Biochemistry and Molecular Genetics Department, Hospital Clínic i Universitari de Barcelona, Barcelona, Spain
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Jordi Mesa
Jordi Mesa
Department of Endocrinology and Nutrition, Hospital Vall d’Hebron, Barcelona, Spain
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Nuria Valdés
Nuria Valdés
Department of Endocrinology and Nutrition, Hospital Universitario Central de Asturias, Oviedo, Spain
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the REGMEN (the Spanish Registry of Multiple Endocrine Neoplasia, Pheochromocytmas and Paragangliomas (PPGL)). Patients and methods The REGMEN is a collaborative and multicentric project designed by the Spanish Group for the Study of MEN and
Jung Soo Lim
Jung Soo Lim
Department of Internal Medicine, Institute of Evidence-Based Medicine, Wonju Severance Christian Hospital, Yonsei University Wonju College of Medicine, Wonju, Gangwon-do, South Korea
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Seung-Eun Lee
Seung-Eun Lee
Department of Internal Medicine, Samsung Medical Center, Sungkyunkwan University School of Medicine, Gangnam-gu, Seoul, South Korea
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Jung Hee Kim
Jung Hee Kim
Department of Internal Medicine, Seoul National University College of Medicine, Jongno-gu, Seoul, South Korea
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Jae Hyeon Kim
Jae Hyeon Kim
Department of Internal Medicine, Samsung Medical Center, Sungkyunkwan University School of Medicine, Gangnam-gu, Seoul, South Korea
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The Korean Adrenal Gland and Endocrine Hypertension Study Group, Korean Endocrine Society
The Korean Adrenal Gland and Endocrine Hypertension Study Group, Korean Endocrine Society
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some limitations as well. First, because it was a retrospective registry-based study, there were missing data of several clinical variables. Multivariable Cox-proportional hazard models for disease outcome were not constructed due to this shortage
Clemens Kamrath
Clemens Kamrath
Center of Child and Adolescent Medicine, Justus Liebig University, Giessen, Germany
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Alexander Eckert
Alexander Eckert
German Center for Diabetes Research (DZD), Munich-Neuherberg, Germany
Institute of Epidemiology and Medical Biometry, ZIBMT, Ulm University, Ulm, Germany
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Institute of Epidemiology and Medical Biometry, ZIBMT, Ulm University, Ulm, Germany
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Birgit Rami-Merhar
Birgit Rami-Merhar
Department of Pediatrics and Adolescent Medicine, Medical University Vienna, Vienna, Austria
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Sebastian Kummer
Sebastian Kummer
Department of General Pediatrics, Neonatology and Pediatric Cardiology, Heinrich Heine University, Medical Faculty, Duesseldorf, Germany
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Martin Wabitsch
Martin Wabitsch
Center for Rare Endocrine Diseases, Division of Pediatric Endocrinology and Diabetes, Department of Pediatrics and Adolescent Medicine, Ulm University Medical Centre, Ulm, Germany
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Katharina Laubner
Katharina Laubner
Division of Endocrinology and Diabetology, Department of Medicine II, Medical Center – University of Freiburg, Faculty of Medicine, University of Freiburg, Freiburg im Breisgau, Germany
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Florian Kopp
Florian Kopp
Forth Clinical Department of Medicine, Academic Teaching Hospital Augsburg, Augsburg, Germany
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Silvia Müther
Silvia Müther
Center for Pediatric Diabetology, DRK-Kliniken-Berlin Westend, Berlin, Germany
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Steffen Mühldorfer
Steffen Mühldorfer
Department for Gastroenterology, Endocrinology and Metabolic Diseases, Bayreuth University Hospital, Friedrich-Alexander University Erlangen-Nuremberg, Bayreuth, Germany
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Reinhard W Holl
Reinhard W Holl
German Center for Diabetes Research (DZD), Munich-Neuherberg, Germany
Institute of Epidemiology and Medical Biometry, ZIBMT, Ulm University, Ulm, Germany
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Institute of Epidemiology and Medical Biometry, ZIBMT, Ulm University, Ulm, Germany
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series. The aim of this study was to evaluate frequency, diabetes care, and outcome of patients with LD and insulin receptoropathies in the large multicenter DPV Registry. Patients and methods Data source and study population The current
Elena V Varlamov
Elena V Varlamov
Department of Medicine (Endocrinology, Diabetes and Clinical Nutrition), Oregon Health & Science University, Portland, Oregon, USA
Department of Neurological Surgery, Oregon Health & Science University, Portland, Oregon, USA
Pituitary Center, Oregon Health & Science University, Portland, Oregon, USA
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Department of Neurological Surgery, Oregon Health & Science University, Portland, Oregon, USA
Pituitary Center, Oregon Health & Science University, Portland, Oregon, USA
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Dan Alexandru Niculescu
Dan Alexandru Niculescu
Department of Neurological Surgery, Oregon Health & Science University, Portland, Oregon, USA
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Swechya Banskota
Swechya Banskota
Department of Medicine (Endocrinology, Diabetes and Clinical Nutrition), Oregon Health & Science University, Portland, Oregon, USA
Department of Neurological Surgery, Oregon Health & Science University, Portland, Oregon, USA
Pituitary Center, Oregon Health & Science University, Portland, Oregon, USA
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Department of Neurological Surgery, Oregon Health & Science University, Portland, Oregon, USA
Pituitary Center, Oregon Health & Science University, Portland, Oregon, USA
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Simona Andreea Galoiu
Simona Andreea Galoiu
Department of Neurological Surgery, Oregon Health & Science University, Portland, Oregon, USA
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Catalina Poiana
Catalina Poiana
Department of Neurological Surgery, Oregon Health & Science University, Portland, Oregon, USA
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Maria Fleseriu
Maria Fleseriu
Department of Medicine (Endocrinology, Diabetes and Clinical Nutrition), Oregon Health & Science University, Portland, Oregon, USA
Department of Neurological Surgery, Oregon Health & Science University, Portland, Oregon, USA
Pituitary Center, Oregon Health & Science University, Portland, Oregon, USA
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Department of Neurological Surgery, Oregon Health & Science University, Portland, Oregon, USA
Pituitary Center, Oregon Health & Science University, Portland, Oregon, USA
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number and statistical accuracy by aggregating data from national or international acromegaly data registries ( 5 , 12 , 16 ). Although the importance of these studies is without question, some have uncovered significant differences between countries
