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Chiara Jongerius Amsterdam UMC, Location AMC, Medical Psychology, Amsterdam, The Netherlands
Amsterdam Public Health, Quality of Care, Amsterdam, The Netherlands

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Marij A Hillen Amsterdam UMC, Location AMC, Medical Psychology, Amsterdam, The Netherlands
Amsterdam Public Health, Quality of Care, Amsterdam, The Netherlands

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Ellen M A Smets Amsterdam UMC, Location AMC, Medical Psychology, Amsterdam, The Netherlands
Amsterdam Public Health, Quality of Care, Amsterdam, The Netherlands

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Mathijs J Mol Amsterdam UMC, Location AMC, Medical Psychology, Amsterdam, The Netherlands

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Eefje S Kooij Amsterdam UMC, Location AMC, Medical Psychology, Amsterdam, The Netherlands

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Maria A de Nood Amsterdam UMC, Location AMC, Medical Psychology, Amsterdam, The Netherlands

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Edwin S Dalmaijer MRC Cognition and Brain Sciences Unit, University of Cambridge, Cambridge, United Kingdom

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Eric Fliers Department of Endocrinology & Metabolism, Amsterdam Gastroenterology, Endocrinology & Metabolism, Amsterdam UMC, Location AMC, Amsterdam, The Netherlands

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Johannes A Romijn Department of Medicine, Amsterdam Gastroenterology, Endocrinology & Metabolism, Amsterdam UMC, Location AMC, Amsterdam, The Netherlands

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Daniel S Quintana University of Oslo, Department of Psychology, Oslo, Norway
Department of Rare Disorders and Disabilities, Oslo University Hospital, NevSom, Oslo, Norway
University of Oslo, Norwegian Centre for Mental Disorders Research (NORMENT) and KG Jebsen Centre for Neurodevelopmental Disorders, Oslo, Norway

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–physician communication and may therefore affect the quality of the relationship. Sub-optimal levels of eye gaze between physicians and patients can negatively affect patient–physician relationships, including the reduced trust of patients in their physicians ( 6 , 11

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Sherwin Criseno Institute of Metabolism and Systems Research, University of Birmingham, Birmingham, UK
Centre for Endocrinology, Diabetes and Metabolism, Birmingham Health Partners, Birmingham, UK
Department of Endocrinology, Queen Elizabeth Hospital, University Hospitals Birmingham NHS Foundation Trust, Birmingham, UK
School of Nursing and Midwifery, Institute of Clinical Sciences, University of Birmingham, UK

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Helena Gleeson Centre for Endocrinology, Diabetes and Metabolism, Birmingham Health Partners, Birmingham, UK
Department of Endocrinology, Queen Elizabeth Hospital, University Hospitals Birmingham NHS Foundation Trust, Birmingham, UK

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Andrew A Toogood Department of Endocrinology, Queen Elizabeth Hospital, University Hospitals Birmingham NHS Foundation Trust, Birmingham, UK

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Neil Gittoes Institute of Metabolism and Systems Research, University of Birmingham, Birmingham, UK
Centre for Endocrinology, Diabetes and Metabolism, Birmingham Health Partners, Birmingham, UK
Department of Endocrinology, Queen Elizabeth Hospital, University Hospitals Birmingham NHS Foundation Trust, Birmingham, UK

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Anne Topping School of Nursing and Midwifery, Institute of Clinical Sciences, University of Birmingham, UK

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Niki Karavitaki Institute of Metabolism and Systems Research, University of Birmingham, Birmingham, UK
Centre for Endocrinology, Diabetes and Metabolism, Birmingham Health Partners, Birmingham, UK
Department of Endocrinology, Queen Elizabeth Hospital, University Hospitals Birmingham NHS Foundation Trust, Birmingham, UK

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-being and quality of life (QoL) ( 3 , 4 ). In adults, treatment with recombinant human growth hormone (GH) improves many of the clinical features associated with GHD ( 5 ). In young adults with severe GHD, GH treatment, following completion of linear

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Izabelle Lövgren Division of Cancer Sciences, School of Medical Sciences, Faculty of Biology, Medicine and Health, The University of Manchester, Manchester, UK

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Azadeh Abravan Division of Cancer Sciences, School of Medical Sciences, Faculty of Biology, Medicine and Health, The University of Manchester, Manchester, UK
Radiotherapy Related Research, The Christie NHS Foundation Trust, Manchester, UK

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Abigail Bryce-Atkinson Division of Cancer Sciences, School of Medical Sciences, Faculty of Biology, Medicine and Health, The University of Manchester, Manchester, UK

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Marcel van Herk Division of Cancer Sciences, School of Medical Sciences, Faculty of Biology, Medicine and Health, The University of Manchester, Manchester, UK
Radiotherapy Related Research, The Christie NHS Foundation Trust, Manchester, UK

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from proliferating following surgical resection, and as a palliative treatment to reduce discomfort and increase quality of life in terminally ill patients ( 4 ). RT may also be used as prophylactic treatment to prevent the spread of cancers such as

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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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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 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 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 Department of Ophthalmology, Leiden University Medical Center, Leiden, The Netherlands

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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 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 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 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 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 Dutch Pituitary Foundation, European Patient Advocacy Group, Nijkerk, The Netherlands

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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

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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 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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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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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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H M van Santen Department of Pediatric Endocrinology, Wilhelmina Children’s Hospital, University Medical Center Utrecht, Utrecht, The Netherlands

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detrimental effects on the quality of life. Patients with HD may experience disturbed hunger-satiety and thirst feelings, decreased energy expenditure, behavioral problems, disturbed circadian rhythm, temperature dysregulation and pituitary dysfunction

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Kevin C J Yuen Departments of Neuroendocrinology and Neurosurgery, Barrow Neurological Institute, University of Arizona College of Medicine and Creighton School of Medicine, Phoenix, Arizona, United States

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Gudmundur Johannsson Department of Endocrinology, Sahlgrenska University Hospital and Institute of Medicine, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden

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Ken K Y Ho The Garvan Institute of Medical Research and the Faculty of Medicine, University of New South Wales, Sydney, Australia

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Bradley S Miller Pediatric Endocrinology, University of Minnesota Medical School, M Health Fairview Masonic Children’s Hospital, Minneapolis, Minnesota, United States

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Ignacio Bergada Centro de Investigaciones Endocrinológicas "Dr César Bergadá" (CEDIE), CONICET-FEI-División de Endocrinología, Hospital de Niños Ricardo Gutiérrez, Buenos Aires, Argentina

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Alan D Rogol Pediatric Diabetes and Endocrinology, University of Virginia, Charlottesville, Virginia, United States

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period is important for the attainment of normal bone mineral density, body composition, muscle mass and strength, exercise recovery, and maintaining the quality of life ( 42 ). GH stimulation testing during the transition period typically utilizes

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Ja Hye Kim Department of Pediatrics, Asan Medical Center Children’s Hospital, University of Ulsan College of Medicine, Seoul, Korea

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Yunha Choi Department of Pediatrics, Asan Medical Center Children’s Hospital, University of Ulsan College of Medicine, Seoul, Korea

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Soojin Hwang Department of Pediatrics, Asan Medical Center Children’s Hospital, University of Ulsan College of Medicine, Seoul, Korea

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Gu-Hwan Kim Medical Genetics Center, Asan Medical Center, University of Ulsan College of Medicine, Seoul, Korea

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Han-Wook Yoo Department of Pediatrics, Asan Medical Center Children’s Hospital, University of Ulsan College of Medicine, Seoul, Korea

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Jin-Ho Choi Department of Pediatrics, Asan Medical Center Children’s Hospital, University of Ulsan College of Medicine, Seoul, Korea

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therapy can increase adult height and induce pubertal development, thereby preventing comorbidities and improving patients’ quality of life. Supplementary materials This is linked to the online version of the paper at https://doi.org/10.1530/EC-21

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Julia Beckhaus Department of Pediatrics and Pediatric Hematology/Oncology, University Children’s Hospital, Carl von Ossietzky Universität, Klinikum Oldenburg AöR, Oldenburg, Germany
Division of Epidemiology and Biometry, Carl von Ossietzky Universität, Oldenburg, Germany

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Maria Eveslage Institute of Biostatistics and Clinical Research, University of Münster, Münster, Germany

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Brigitte Bison Diagnostic and Interventional Neuroradiology, Faculty of Medicine, University of Augsburg, Augsburg, Germany

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Carsten Friedrich Department of Pediatrics and Pediatric Hematology/Oncology, University Children’s Hospital, Carl von Ossietzky Universität, Klinikum Oldenburg AöR, Oldenburg, Germany

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Hermann L Müller Department of Pediatrics and Pediatric Hematology/Oncology, University Children’s Hospital, Carl von Ossietzky Universität, Klinikum Oldenburg AöR, Oldenburg, Germany

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attacks ( 23 ). Multiple previous studies on patients with childhood-onset CP have shown that obesity and the resulting body image have a crucial impact on quality of life of the long-term survivors ( 24 , 25 , 26 ). Our study has certain limitations

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Vanderlan O Batista Division of Psychiatry, Health Sciences Graduate Program, Federal University of Sergipe, Aracaju, Sergipe, Brazil

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Michael Kellner Department of Psychiatry and Psychotherapy, University Hospital Hamburg-Eppendorf, Hamburg, Germany and Technical University of Munich, Munich, Germany

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Roberto Salvatori Division of Endocrinology, Diabetes and Metabolism, Department of Medicine, The Johns Hopkins University School of Medicine, Baltimore, Maryland, USA

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Walter Lisboa Department of Psychology, Federal University of Sergipe, São Cristovão, Sergipe, Brazil

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André Faro Postgraduate Program in Psychology, Federal University of Sergipe, São Cristovão, Sergipe, Brazil

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Lucas B Santos Division of Endocrinology, Health Sciences Graduate Program, Federal University of Sergipe, Aracaju, Sergipe, Brazil

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Enaldo V Melo Statistics division, Health Sciences Graduate Program, Federal University of Sergipe, Aracaju, Sergipe, Brazil

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Alécia A Oliveira-Santos Division of Endocrinology, Health Sciences Graduate Program, Federal University of Sergipe, Aracaju, Sergipe, Brazil

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Carla R P Oliveira Division of Endocrinology, Health Sciences Graduate Program, Federal University of Sergipe, Aracaju, Sergipe, Brazil

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Viviane C Campos Division of Endocrinology, Health Sciences Graduate Program, Federal University of Sergipe, Aracaju, Sergipe, Brazil

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Cynthia S Barros-Oliveira Division of Endocrinology, Health Sciences Graduate Program, Federal University of Sergipe, Aracaju, Sergipe, Brazil

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Elenilde G Santos Division of Endocrinology, Health Sciences Graduate Program, Federal University of Sergipe, Aracaju, Sergipe, Brazil

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Nathalie O Santana Division of Endocrinology, Health Sciences Graduate Program, Federal University of Sergipe, Aracaju, Sergipe, Brazil

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Keila R Villar-Gouy Division of Endocrinology, Health Sciences Graduate Program, Federal University of Sergipe, Aracaju, Sergipe, Brazil

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Ângela C Leal Division of Endocrinology, Health Sciences Graduate Program, Federal University of Sergipe, Aracaju, Sergipe, Brazil

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Rivia S Amorim Division of Geriatrics, Health Sciences Graduate Program, Federal University of Sergipe, Aracaju, Sergipe, Brazil

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Davi A Oliveira Simões Division of Endocrinology, Health Sciences Graduate Program, Federal University of Sergipe, Aracaju, Sergipe, Brazil

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Manuel H Aguiar-Oliveira Division of Endocrinology, Health Sciences Graduate Program, Federal University of Sergipe, Aracaju, Sergipe, Brazil

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known for targeting pathways associated with longevity such as mTOR, AKT, NFκB, and IRS1s ( 22 ). As a result, despite the cardiovascular disease risk factors, their longevity is similar to that of their unaffected siblings ( 19 ). The excellent quality

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Julia Beckhaus Department of Pediatrics and Pediatric Hematology/Oncology, University Children’s Hospital, Carl von Ossietzky University, Klinikum Oldenburg AöR, Oldenburg, Germany
Division of Epidemiology and Biometry, Carl von Ossietzky University, Oldenburg, Germany

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Svenja Boekhoff Department of Pediatrics and Pediatric Hematology/Oncology, University Children’s Hospital, Carl von Ossietzky University, Klinikum Oldenburg AöR, Oldenburg, Germany

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Katrin Scheinemann Pediatric Hematology-Oncology Center, Children’s Hospital of Eastern Switzerland, St. Gallen, Switzerland
Faculty of Health Sciences and Medicine, University of Lucerne, Lucerne, Switzerland
Department of Pediatrics, McMaster Children’s Hospital and McMaster University, Hamilton, Ontario, Canada

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Freimut H Schilling Department of Pediatrics, Division of Pediatric Hematology and Oncology, Children’s Hospital Lucerne, Lucerne, Switzerland

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Gudrun Fleischhack Pediatrics III, University Hospital of Essen, Essen, Germany

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Gerhard Binder University Children’s Hospital, Pediatric Endocrinology, University Tübingen, Tübingen, Germany

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Brigitte Bison Diagnostic and Interventional Neuroradiology, Faculty of Medicine, University of Augsburg, Augsburg, Germany

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Torsten Pietsch Institute of Neuropathology, DGNN Brain Tumor Reference Center, University of Bonn Medical Center, Bonn, Germany

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Carsten Friedrich Department of Pediatrics and Pediatric Hematology/Oncology, University Children’s Hospital, Carl von Ossietzky University, Klinikum Oldenburg AöR, Oldenburg, Germany

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Hermann L Müller Department of Pediatrics and Pediatric Hematology/Oncology, University Children’s Hospital, Carl von Ossietzky University, Klinikum Oldenburg AöR, Oldenburg, Germany

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in this age group, while the papillary type is almost only prevalent in adults ( 1 ). The diagnosis of CP in the fetal and neonatal periods is uncommon. Due to modern and noninvasive diagnostic techniques such as MRI and high-quality ultrasound

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