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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Introduction The field of clinical endocrinology covers a very wide range of rare conditions. However, clear information on the incidence and prevalence of these conditions is lacking. By pooling standardised information from several sources
Faculty of Medicine Division 2, Internal Medicine Endocrinology, Leiden University Medical Centre, Leiden, The Netherlands
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Faculty of Medicine Division 2, Internal Medicine Endocrinology, Leiden University Medical Centre, Leiden, The Netherlands
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Department of Paediatrics, UMHAT ‘Sveta Marina’ Varna, Medical University of Varna, Varna, Bulgaria
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Introduction The Clinical Patient Management System (CPMS) is a secure web-based application which was specifically developed by the European Commission for the European Reference Networks (ERNs) for rare and complex conditions ( 1 , 2 ). The
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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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Diabeter, National Diabetes Care and Research Centre, Rotterdam, the Netherlands
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Department of Paediatric Endocrinology, Leiden University Medical Centre, Leiden, the Netherlands
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Academic Centre for Growth, Erasmus University Medical Centre, Rotterdam, the Netherlands
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recommended by Monaghan et al . Information about transition readiness in rare endocrine conditions (rEC) is scarce. To minimise dropout after transfer to adult endocrine healthcare, it is essential to examine this particular group of patients in detail
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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pediatric compared to adult age range. In childhood, there is a large variety of genetic conditions, and many patients still die early because of delayed diagnosis or nonexistent treatment ( 4 ). In adulthood, patients with rare endocrine diseases are
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be motivating for more intense research efforts and further strengthen social solidarity as it is driven by ENDO-ERN, the European Reference Network on Rare Endocrine Conditions, for example. European reference networks are virtual networks of experts
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Université de Paris, Institut Cochin, Inserm U1016, CNRS UMR8104, Paris, France
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types of rare diseases. HCPs with national endorsement for expertise in specific rare conditions were candidates to join a new initiative for virtual European Union (EU) networks of reference centers, the European Reference Networks (ERNs). Following a
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Division of Endocrinology, Diabetes and Metabolism, Department of Medical Sciences, University of Turin, Turin, Italy
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Department of Endocrinology, Karolinska University Hospital, Stockholm, Sweden
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Department of Medical Biotechnology and Translational Medicine, University of Milan, Milan Italy
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Department of Medicine, Haukeland University Hospital, Bergen, Norway
Department of Medicine, Karolinska Institutet, Stockholm, Sweden
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Department of Medicine, Division of Endocrinology, Leiden University Medical Center, Leiden, The Netherlands
Developmental Endocrinology Research Group, University of Glasgow, Glasgow, United Kingdom
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for better guidance during the ongoing pandemic. Materials and methods The e-reporting tool (e-REC) that has been developed as part of the European Registries for Rare Endocrine Conditions project was funded by the EU Health Programme (2014
Department of Pediatric Endocrinology, Wilhelmina Children’s Hospital/ University Medical Center Utrecht, Utrecht, The Netherlands
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Princess Máxima Center for Pediatric Oncology, Utrecht, The Netherlands
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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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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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Princess Máxima Center for Pediatric Oncology, Utrecht, The Netherlands
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provide the basis for a collaborative European thyroid cancer registry across all ages and all disease states. Methods The European Registries for Rare Endocrine Conditions (EuRRECa) detailed patient registry is a prospective, multicenter
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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