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20,000 births in Europe. PWS is usually diagnosed early in life and then managed by pediatric teams. Transition is defined as ‘a process of organized and coordinated change of adolescents and young adults with a chronic medical condition from a
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INSERM, UMRS 1166, Nutriomic Group 6, Paris, France
Sorbonne Université, UMRS1166, Paris, France
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in 21,000 births in France ( 1 ). PWS is caused by the lack of expression of paternal-origin imprinted alleles on chromosome 15 ( 2 ). PWS is now usually diagnosed early in life and then managed by pediatric teams ( 1 ). The transition of patients
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Amsterdam UMC, Emma’s Children’s Hospital, Amsterdam, The Netherlands
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physicians coordinates the transition between oncology and primary care, and consultations with subspecialty providers as needed. Regular consultations involving LTFU specialists from both pediatric and internal medicine as well as (initial) joint meetings
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adult endocrinologists and nurse specialists were invited to attend an expert meeting in Vienna, Austria, on 5–6 June 2015 entitled ‘Bridging the Gap: Metabolic and Endocrine Care of Patients during Transition’ to discuss and share how transitional care
UPMC Univ, Paris, France
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Université Paris Descartes, Paris, France
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UPMC Univ, Paris, France
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Introduction Transition is defined by the Society for Adolescent Medicine as a ‘purposeful, planned movement of adolescents and young adults with chronic physical and medical conditions from child-centered to adult-oriented health care system
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treatment during transition, especially with treatment costing up to £5000 per year in adulthood ( 7 ). The current guideline has approved continuation of GH replacement in those who were confirmed to have persistent GHD through the transition phase
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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endocrinologist in congenital forms and craniopharyngiomas, so shared care is relevant to ensure optimal expertise. The management of these conditions requires special precautions during the most delicate phases of patients' lives, for example, in the transition
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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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Introduction Up to 50% of young adults with an endocrine disorder is lost to follow up after transfer to adult health care services ( 1 ). There is no consensus about the optimal timing of transition ( 2 ). Adolescents and young adults (AYA
AP-HP.Nord-Université de Paris, Hôpital Universitaire Robert Debré, Unité d’Épidémiologie Clinique, Inserm, Paris, France
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organs affected, the age of disclosure and the need for paramedical or social care and support. In recent decades, the survival rate of these paediatric patients has improved, and their care pathway now involves a transition to adult care around their
Developmental Endocrinology Research Group, University of Glasgow, Glasgow, UK
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Institute of Cancer and Genomic Sciences, University of Birmingham, Birmingham, UK
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Centre for Endocrinology, William Harvey Research Institute, Barts and The London Medical School, Queen Mary University of London, London, UK
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Department of Endocrinology, Imperial College Healthcare NHS Trust, Hammersmith Hospital, London, UK
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Department of Paediatric Endocrinology, Makarios Children's Hospital, Nicosia, Cyprus
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Sussex Community NHS Trust, Brighton, UK
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Developmental Endocrinology Research Group, University of Glasgow, Glasgow, UK
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The University of Dublin, Trinity College Dublin, Dublin, Republic of Ireland
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issues, including management. Support through community care. Recognition of mental health conditions. Management of acute illness. Transition to adult services. Scope and target population This guidance document covers