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Shams Ali Baig College of Medical and Dental Sciences, University of Birmingham, Birmingham, United Kingdom

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Kashish Malhotra Department of Surgery, Rama Medical College Hospital and Research Centre, Hapur, Uttar Pradesh, India
Institute of Applied Health Research, College of Medical and Dental Sciences, University of Birmingham, Birmingham, UK

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Anagh Josh Banerjee College of Medical and Dental Sciences, University of Birmingham, Birmingham, United Kingdom

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Mukunth Kowsik College of Medical and Dental Sciences, University of Birmingham, Birmingham, United Kingdom

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Khushi Kumar College of Medical and Dental Sciences, University of Birmingham, Birmingham, United Kingdom

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Fazna Rahman College of Medical and Dental Sciences, University of Birmingham, Birmingham, United Kingdom

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Syeda Sabbah Batul College of Medical and Dental Sciences, University of Birmingham, Birmingham, United Kingdom

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Mohammed Faraaz Saiyed College of Medical and Dental Sciences, University of Birmingham, Birmingham, United Kingdom

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Vardhan Venkatesh College of Medical and Dental Sciences, University of Birmingham, Birmingham, United Kingdom

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Pranav Viswanath Iyer College of Medical and Dental Sciences, University of Birmingham, Birmingham, United Kingdom

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Punith Kempegowda Institute of Applied Health Research, College of Medical and Dental Sciences, University of Birmingham, Birmingham, UK
Queen Elizabeth Hospital, University Hospitals Birmingham NHS Foundation Trust, Birmingham, UK

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source for knowledge on various health topics. However, the unrestricted nature of this platform poses significant challenges, with concerns about the accuracy, quality, and reliability of health information presented in YouTube® videos ( 1 ). Among

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Jyotsna S Jagai Division of Environmental and Occupational Health Sciences, School of Public Health, University of Illinois at Chicago, Chicago, Illinois, USA

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Alison K Krajewski Oak Ridge Institute for Science and Education, U.S. Environmental Protection Agency, Center for Public Health and Environmental Assessment, Public Health and Environmental Systems Division, Chapel Hill, North Carolina, USA
U.S. Environmental Protection Agency, Center for Public Health and Environmental Assessment, Research Triangle Park, North Carolina, USA

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Kyla N Price Division of Endocrinology, Diabetes, and Metabolism, Department of Medicine, University of Illinois at Chicago, Chicago, Illinois, USA

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Danelle T Lobdell U.S. Environmental Protection Agency, Center for Public Health and Environmental Assessment, Research Triangle Park, North Carolina, USA

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Robert M Sargis Division of Endocrinology, Diabetes, and Metabolism, Department of Medicine, University of Illinois at Chicago, Chicago, Illinois, USA

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some studies have identified potential environmental factors that contribute to DC, to the best of our knowledge, none provides a comprehensive assessment of various environmental domains. The Environmental Quality Index (EQI) was designed to provide a

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Marieke Stientje Velema Department of Internal Medicine, Radboud University Medical Center, Nijmegen, the Netherlands

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Aline de Nooijer Department of Internal Medicine, Radboud University Medical Center, Nijmegen, the Netherlands

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Ad R M M Hermus Department of Internal Medicine, Radboud University Medical Center, Nijmegen, the Netherlands

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Henri J L M Timmers Department of Internal Medicine, Radboud University Medical Center, Nijmegen, the Netherlands

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Jacques W M Lenders Department of Internal Medicine, Radboud University Medical Center, Nijmegen, the Netherlands
Department of Internal Medicine III, University Hospital Carl Gustav Carus at the Technical University Dresden, Dresden, Germany

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Olga Husson Division of Clinical Studies, Institute of Cancer Research, London, UK

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Jaap Deinum Department of Internal Medicine, Radboud University Medical Center, Nijmegen, the Netherlands
Department of Internal Medicine III, University Hospital Carl Gustav Carus at the Technical University Dresden, Dresden, Germany

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independent, non-profit cancer research organization which coordinates and conducts international translational and clinical research to improve the standard of cancer treatment for patients. The EORTC Quality of Life Group is dedicated to the development of

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Caroline Nguyen Université de Paris, FHU DDS-Net, Dental School, Paris, France

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Elisabeth Celestin Filière OSCAR, Paris, France

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Delphine Chambolle Association of People with Vitamin-Resistant Hypophosphatemic Rickets, Suresnes, France

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Agnès Linglart Filière OSCAR, Paris, France
Paris Saclay University, AP-HP, DMU SEA, Endocrinology and Diabetes for Children, Le Kremlin Bicêtre, France
Reference Center for Rare Disorders of the Calcium and Phosphate Metabolism, Le Kremlin Bicêtre, France
Filière OSCAR and Platform of Expertise for Rare Diseases Paris-Saclay, Bicêtre Paris-Saclay Hospital, INSERM-U1185, Le Kremlin Bicêtre, France

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Martin Biosse Duplan Université de Paris, FHU DDS-Net, Dental School, Paris, France
APHP-Center for Rare Diseases of Calcium and Phosphate Metabolism, Paris, France
Hôpital Bretonneau, Service de Médecine Bucco-Dentaire, GH Nord Université de Paris, Paris, France
Université de Paris, Inserm U1163, Institute Imagine, Paris, France

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Catherine Chaussain Université de Paris, FHU DDS-Net, Dental School, Paris, France
APHP-Center for Rare Diseases of Calcium and Phosphate Metabolism, Paris, France
Hôpital Bretonneau, Service de Médecine Bucco-Dentaire, GH Nord Université de Paris, Paris, France
Université de Paris, URP2496, Paris, France

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Lisa Friedlander Université de Paris, FHU DDS-Net, Dental School, Paris, France
Université de Paris Laboratoire ECEVE INSERM, UMR1123, Hôpital Robert Debré, Paris, France
Centre de Reference, Maladies Orales et Dentaires Rares, Hôpital Rothschild, APHP, Paris, France
Filière de Santé Maladies Rares TETECOU, Malformations Rares de la tête, du cou et des dents, Hôpital Necker, Paris, France

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manage many aspects of care that the disease necessitates. The rarity of the disease makes it difficult for patients to have access to high-quality oral care. Not only are few competent professionals known for the management of this disease but also

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L M Mongioì Department of Clinical and Experimental Medicine, University of Catania, Catania, Italy

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R A Condorelli Department of Clinical and Experimental Medicine, University of Catania, Catania, Italy

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S La Vignera Department of Clinical and Experimental Medicine, University of Catania, Catania, Italy

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A E Calogero Department of Clinical and Experimental Medicine, University of Catania, Catania, Italy

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with primary or central AI. Another aim was to evaluate health-related quality of life of these subjects, assessed by self-administered questionnaire. Subjects and methods Since the prescription of dual-release hydrocortisone has been approved

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Morten Ruge Center for Clinical Research and Disease Prevention, Bispebjerg and Frederiksberg Hospital, The Capital Region, Copenhagen, Denmark

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Tea Skaaby Center for Clinical Research and Disease Prevention, Bispebjerg and Frederiksberg Hospital, The Capital Region, Copenhagen, Denmark

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Anna-Maria Andersson Department of Growth and Reproduction, Rigshospitalet, University of Copenhagen, Copenhagen, Denmark
International Center for Research and Research Training in Endocrine Disruption of Male Reproduction and Child Health (EDMaRC), Rigshospitalet, University of Copenhagen, Copenhagen, Denmark

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Allan Linneberg Center for Clinical Research and Disease Prevention, Bispebjerg and Frederiksberg Hospital, The Capital Region, Copenhagen, Denmark
Department of Clinical Experimental Research, Rigshospitalet, Copenhagen, Denmark
Department of Clinical Medicine, Faculty of Health and Medical Sciences, University of Copenhagen, Copenhagen, Denmark

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examination included a self-administered questionnaire, a physical examination and blood sampling. The questionnaire provided information on age, smoking habits, alcohol consumption, physical activity, sleep quality and total hours of sleep per night and the

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Anne Bachelot Department of Endocrinology and Reproductive Medicine and Centre de Référence des Maladies Endocriniennes Rares de la croissance et Centre des Pathologies gynécologiques Rares, AP-HP, IE3M, Hôpital Pitié-Salpêtrière, ICAN, Paris, France
UPMC Univ, Paris, France

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Magaly Vialon Department of Endocrinology and Reproductive Medicine and Centre de Référence des Maladies Endocriniennes Rares de la croissance et Centre des Pathologies gynécologiques Rares, AP-HP, IE3M, Hôpital Pitié-Salpêtrière, ICAN, Paris, France

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Amandine Baptiste AP-HP, Clinical Research Unit Paris Descartes Necker Cochin, Paris, France

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Isabelle Tejedor Department of Endocrinology and Reproductive Medicine and Centre de Référence des Maladies Endocriniennes Rares de la croissance et Centre des Pathologies gynécologiques Rares, AP-HP, IE3M, Hôpital Pitié-Salpêtrière, ICAN, Paris, France

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Caroline Elie AP-HP, Clinical Research Unit Paris Descartes Necker Cochin, Paris, France

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Michel Polak Department of Pediatric Endocrinology, Gynecology and Diabetology, Centre de Référence des Maladies Endocriniennes Rares de la Croissance et Centre des pathologies gynécologiques Rares, Hôpital Universitaire Necker Enfants malades, Paris, France
Université Paris Descartes, Paris, France

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Philippe Touraine Department of Endocrinology and Reproductive Medicine and Centre de Référence des Maladies Endocriniennes Rares de la croissance et Centre des Pathologies gynécologiques Rares, AP-HP, IE3M, Hôpital Pitié-Salpêtrière, ICAN, Paris, France
UPMC Univ, Paris, France

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the CRMERC study group
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lost to follow-up ( 12 ). Health-related quality of life (QoL) in adult patients with CAH has been variously reported ( 13 , 14 , 15 ). The reason for this heterogeneity in QoL reporting for CAH adults is debated but could relate to variables

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Diana-Alexandra Ertl Department of Pulmonology, Allergology and Endocrinology, University Clinic for Pediatrics and Adolescent Medicine, Medical University of Vienna, Vienna, Austria

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Andreas Gleiss Center for Medical Statistics, Informatics, and Intelligent Systems, Medical University of Vienna, Vienna, Austria

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Katharina Schubert Department of Pulmonology, Allergology and Endocrinology, University Clinic for Pediatrics and Adolescent Medicine, Medical University of Vienna, Vienna, Austria

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Caroline Culen Department of Pulmonology, Allergology and Endocrinology, University Clinic for Pediatrics and Adolescent Medicine, Medical University of Vienna, Vienna, Austria

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Peer Hauck Pediatric Heart Center Vienna, University Clinic for Pediatrics and Adolescent Medicine, Medical University of Vienna, Vienna, Austria

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Johannes Ott Clinic Division for Gynecologic Endocrinology and Reproductive Medicine, Medical University of Vienna, Vienna, Austria

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Alois Gessl Division of Endocrinology, University Clinic of Internal Medicine III, Medical University of Vienna, Vienna, Austria

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Gabriele Haeusler Department of Pulmonology, Allergology and Endocrinology, University Clinic for Pediatrics and Adolescent Medicine, Medical University of Vienna, Vienna, Austria

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assess the subjective and objective quality of current medical care of adult patients with TS, who had been under the care of our pediatric department, to screen for comorbidities and to evaluate their quality of life (QoL). We combined standardized

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Mikkel Andreassen Department of Endocrinology, Faculty of Health Science, Rigshospitalet, University of Copenhagen, Copenhagen, Denmark

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Anders Juul Department of Growth and Reproduction, Faculty of Health Science, Rigshospitalet, University of Copenhagen, Copenhagen, Denmark

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Ulla Feldt-Rasmussen Department of Endocrinology, Faculty of Health Science, Rigshospitalet, University of Copenhagen, Copenhagen, Denmark

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Niels Jørgensen Department of Growth and Reproduction, Faculty of Health Science, Rigshospitalet, University of Copenhagen, Copenhagen, Denmark

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result in testosterone deficiency at some point ( 6 , 7 ). However, little is known about how and when deterioration of semen quality occurs in these patients. Previous studies have primarily examined semen quality in prolactinoma patients with

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Dirk-Jan van Beek Department of Endocrine Surgical Oncology, University Medical Center Utrecht, Utrecht, The Netherlands

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Rachel S van Leeuwaarde Department of Endocrine Oncology, University Medical Center Utrecht, Utrecht, The Netherlands

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Carolina R C Pieterman Department of Endocrine Oncology, University Medical Center Utrecht, Utrecht, The Netherlands

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Menno R Vriens Department of Endocrine Surgical Oncology, University Medical Center Utrecht, Utrecht, The Netherlands

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Gerlof D Valk Department of Endocrine Oncology, University Medical Center Utrecht, Utrecht, The Netherlands
Parelsnoer Institute, Utrecht, The Netherlands

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the DutchMEN Study Group
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Introduction Rare diseases that affect less than one in 2000 people, pose challenges in supporting patients and physicians with evidence-based guidelines of sufficient quality ( 1 ). Medical decision making becomes challenging when guidelines

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