Division of Endocrinology, Department of Medicine, Leiden University Medical Center, Leiden, the Netherlands
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Università “Federico II” di Napoli, Dipartimento di Medicina Clinica e Chirurgia, Sezione di Endocrinologia, Naples, Italy
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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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Adult Chair of MTG Pituitary of Endo-ERN
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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
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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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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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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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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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
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Université de Paris, Institut Cochin, Inserm U1016, CNRS UMR8104, Paris, France
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, the unmet needs, the targeted age groups of patients and other features of the disease/group of diseases. Endo-ERN initially included 78 HCPs from 26 countries, and after Brexit and the last enlargement in Jan 2022 – 97 HCP members, 13 associated
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Introduction The European Reference Network on Rare Endocrine Conditions (Endo-ERN) was sufficiently installed in 2017 together with 23 other European reference networks (ERNs) for rare diseases (RDs). The organization and governance of Endo-ERN
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University of Glasgow, Office for Rare Conditions, Glasgow, UK
University of Glasgow, Developmental Endocrinology Research Group, Royal Hospital for Children, Glasgow, UK
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international accreditation for the diagnosis and treatment of CS ( 16 ). To further map local practice patterns and associated VTE complications in CS, we performed a study across the European Reference Network on Rare Endocrine Conditions (Endo-ERN) expert
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European Reference Network on Rare Endocrine Conditions (Endo-ERN), which has 8 Main Thematic disease Groups (MTGs) ( https://endo-ern.eu/specific-expertise/overview-mtg/ ). Every MTG has 4 chairs – a pediatric, and an adult professional, and a pediatric
Department of Endocrinology and Metabolic Diseases, IRCCS Istituto Auxologico Italiano, Milan, Italy
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Department of Clinical Sciences and Community Health, University of Milan, Milan, Italy
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West of Scotland Centre for Genomic Medicine, Queen Elizabeth University Hospital, Glasgow, United Kingdom
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7 (MTG7) dedicated to rare conditions of SDM within the European Reference Network on rare endocrine conditions (Endo-ERN; www.endo-ern.eu ) ( 3 ). Methods An international survey was circulated among the HCPs of MTG7 within Endo-ERN in
Office for Rare Conditions, Royal Hospital for Children & Queen Elizabeth University Hospital, Glasgow, UK
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Department of Paediatric Endocrinology, Ghent University Hospital, Ghent, Belgium
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Department of Medicine & Clinical Epidemiology, Leiden University Medical Centre, Leiden, the Netherlands
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Department of Medical Biotechnology and Translational Medicine, University of Milan, Milan, Italy
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Amsterdam Gastroenterology Endocrinology and Metabolism, Amsterdam, 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
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Department of Endocrine and Metabolic Diseases, Istituto Auxologico Italiano IRCCS, Milan, Italy
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.N.). Acknowledgement This manuscript has been written in collaboration with the European Reference Network on rare endocrine conditions (EndoERN), specifically the main thematic groups MTG1 (adrenal) and MTG7 (sex development & maturation). Endo-ERN is funded by the