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Kjersti S Bakken Women’s Clinic, Innlandet Hospital Trust, Lillehammer, Norway
Center for International Health, University of Bergen, Bergen, Norway

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Kristina Randjelovic Nermo Center for International Health, University of Bergen, Bergen, Norway
Department of Microbiology, Innlandet Hospital Trust, Lillehammer, Norway

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Bjørn Gunnar Nedrebø Department of Medicine, Haugesund Hospital, Haugesund, Norway
Department of Clinical Science, University of Bergen, Bergen, Norway

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Tim I M Korevaar Academic Center for Thyroid Diseases, Erasmus University Medical Center, Rotterdam, the Netherlands

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Tor A Strand Center for International Health, University of Bergen, Bergen, Norway
Department of Research, Innlandet Hospital Trust, Lillehammer, Norway

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study was to use national medical registers to describe the proportion of pregnant women using thyroid therapy during the last two decades in Norway. Material and methods This is an observational population-based study combining historical data

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S C Clement Department of Pediatrics, Emma Children’s Hospital, Amsterdam University Medical Center, University of Amsterdam, Amsterdam, The Netherlands
Department of Pediatric Endocrinology, Wilhelmina Children’s Hospital/ University Medical Center Utrecht, Utrecht, The Netherlands

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W E Visser Academic Center For Thyroid Disease, Department of Internal Medicine, Erasmus Medical Center, Rotterdam, The Netherlands

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C A Lebbink Department of Pediatric Endocrinology, Wilhelmina Children’s Hospital/ University Medical Center Utrecht, Utrecht, The Netherlands
Princess Máxima Center for Pediatric Oncology, Utrecht, The Netherlands

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D Albano Department of Nuclear Medicine, University of Brescia and Spedali Civili of Brescia, Brescia, Italy

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H L Claahsen-van der Grinten Department of Pediatrics, Radboud University Medical Center, Amalia Children's Hospital, Nijmegen, The Netherlands

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A Czarniecka The Oncologic and Reconstructive Surgery Clinic, M. Sklodowska-Curie National Research Institute of Oncology Gliwice Branch, Gliwice, Poland

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R P Dias Department of Endocrinology and Diabetes, Birmingham Children’s Hospital, Birmingham Women’s, and Children’s NHS Foundation Trust, Birmingham, UK
Institute of Metabolism and Systems Research, College of Medical and Dental Sciences, University of Birmingham, Birmingham, UK

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M P Dierselhuis Princess Máxima Center for Pediatric Oncology, Utrecht, The Netherlands

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I Dzivite-Krisane Department of Pediatric Endocrinology, Children's Clinical University Hospital, Riga, Latvia

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R Elisei Endocrine Unit, Department of Clinical and Experimental Medicine, University of Pisa, Pisa, Italy

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A Garcia-Burillo Nuclear Medicine Department, Vall d'Hebron University Hospital, Barcelona, Spain

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L Izatt Department of Clinical Genetics, Guy's and St Thomas’ NHS Foundation Trust, London, UK

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C Kanaka-Gantenbein Division of Endocrinology, Diabetes, and Metabolism, First Department of Pediatrics National and Kapodistrian University of Athens Medical School, Aghia Sophia Children's Hospital, Athens, Greece

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H Krude Institute of Experimental Pediatric Endocrinology, Charité - Universitätsmedizin, Berlin, Germany

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L Lamartina Department of Endocrine Oncology, Gustave Roussy, Villejuif, France

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K Lorenz Department of Visceral, Vascular and Endocrine Surgery, Martin Luther University Halle-Wittenberg, Halle (Saale), Germany

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M Luster Department of Nuclear Medicine, University Hospital Marburg, Marburg, Germany

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R Navardauskaitė Department of Endocrinology, Lithuanian University of Health Sciences, Kaunas, Lithuania

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M Negre Busó Nuclear Medicine Service - Institut de diagnòstic per la Imatge, Hospital Universitari de Girona Dr. Josep Trueta, Girona, Spain

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K Newbold Thyroid Therapy Unit, The Royal Marsden NHS Foundation Trust Hospital, London, UK

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R P Peeters Academic Center For Thyroid Disease, Department of Internal Medicine, Erasmus Medical Center, Rotterdam, The Netherlands

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G Pellegriti Endocrinology, Endocrinology Division, Garibaldi-Nesima Medical Center, Catania, Italy

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A Piccardo Department of Nuclear Medicine, EO Ospedali Galliera, Genoa, Italy

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A L Priego Department of Medicine, Division of Endocrinology, Leiden, University medical Center, Leiden, The Netherlands

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A Redlich Pediatric Oncology Department, Otto von Guericke University Children's Hospital, Magdeburg, Germany

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L de Sanctis Regina Margherita Children Hospital - Department of Public Health and Pediatric Sciences, University of Torino, Torino, Italy

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M Sobrinho-Simões University Hospital of São João, Medical Faculty and Institute of Molecular Pathology and Immunology, University of Porto, Porto, Portugal

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A S P van Trotsenburg Department of Pediatric Endocrinology, Emma Children’s Hospital, Amsterdam University Medical Center, University of Amsterdam, Amsterdam, The Netherlands

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F A Verburg Department of Radiology & Nuclear Medicine, Erasmus MC Rotterdam, Rotterdam, The Netherlands

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M Vriens Department of Endocrine Surgery, University Medical Center Utrecht, Utrecht, The Netherlands

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T P Links Department of Endocrinology, University Medical Center Groningen, Groningen, The Netherlands

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S F Ahmed Endocrinology, Endocrinology Division, Garibaldi-Nesima Medical Center, Catania, Italy
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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H M van Santen Department of Pediatric Endocrinology, Wilhelmina Children’s Hospital/ University Medical Center Utrecht, Utrecht, The Netherlands
Princess Máxima Center for Pediatric Oncology, Utrecht, The Netherlands

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Background

Although differentiated thyroid carcinoma (DTC) is the most frequent endocrine pediatric cancer, it is rare in childhood and adolescence. While tumor persistence and recurrence are not uncommon, mortality remains extremely low. Complications of treatment are however reported in up to 48% of the survivors. Due to the rarity of the disease, current treatment guidelines are predominantly based on the results of small observational retrospective studies and extrapolations from results in adult patients. In order to develop more personalized treatment and follow-up strategies (aiming to reduce complication rates), there is an unmet need for uniform international prospective data collection and clinical trials.

Methods and analysis

The European pediatric thyroid carcinoma registry aims to collect clinical data for all patients ≤18 years of age with a confirmed diagnosis of DTC who have been diagnosed, assessed, or treated at a participating site. This registry will be a component of the wider European Registries for Rare Endocrine Conditions project which has close links to Endo-ERN, the European Reference Network for Rare Endocrine Conditions. A multidisciplinary expert working group was formed to develop a minimal dataset comprising information regarding demographic data, diagnosis, treatment, and outcome. We constructed an umbrella-type registry, with a detailed basic dataset. In the future, this may provide the opportunity for research teams to integrate clinical research questions.

Ethics and dissemination

Written informed consent will be obtained from all participants and/or their parents/guardians. Summaries and descriptive analyses of the registry will be disseminated via conference presentations and peer-reviewed publications.

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Jan Calissendorff Department of Endocrinology, Metabolism and Diabetes, Karolinska University Hospital, Stockholm, Sweden
Department of Molecular Medicine and Surgery, Karolinska Institutet, Stockholm, Sweden

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Henrik Falhammar Department of Endocrinology, Metabolism and Diabetes, Karolinska University Hospital, Stockholm, Sweden
Department of Molecular Medicine and Surgery, Karolinska Institutet, Stockholm, Sweden

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been applied which makes comparisons difficult. It can be argued that the dose in our cohort should be higher as our subjects generally had untreated disease due to side effects of anti-thyroid therapy. Optimal doses and duration of therapy to achieve

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Aaron Lerner B. Rappaport School of Medicine, Technion-Israel Institute of Technology, Haifa, Israel
AESKU.KIPP Institute, Wendelsheim, Germany

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Patricia Jeremias AESKU.KIPP Institute, Wendelsheim, Germany

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Torsten Matthias AESKU.KIPP Institute, Wendelsheim, Germany

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, skin, nerves, etc. Thyroid Therapy Gluten free diet Symptomatic, thyroid replacement therapy CMV, cytomegalo virus; DGP, diamidated gliadin peptide; EBV, Epshtein Bar virus; EMA, endomysial antibodies; HBV, hepatitis B virus; HCV

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Xiaomin Nie Department of Endocrinology and Metabolism, Shanghai Jiao Tong University Affiliated Sixth People’s Hospital; Shanghai Clinical Center for Diabetes; Shanghai Key Clinical Center for Metabolic Disease; Shanghai Diabetes Institute; Shanghai Key Laboratory of Diabetes Mellitus, Shanghai, China

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Yiting Xu Department of Endocrinology and Metabolism, Shanghai Jiao Tong University Affiliated Sixth People’s Hospital; Shanghai Clinical Center for Diabetes; Shanghai Key Clinical Center for Metabolic Disease; Shanghai Diabetes Institute; Shanghai Key Laboratory of Diabetes Mellitus, Shanghai, China

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Xiaojing Ma Department of Endocrinology and Metabolism, Shanghai Jiao Tong University Affiliated Sixth People’s Hospital; Shanghai Clinical Center for Diabetes; Shanghai Key Clinical Center for Metabolic Disease; Shanghai Diabetes Institute; Shanghai Key Laboratory of Diabetes Mellitus, Shanghai, China

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Yun Shen Department of Endocrinology and Metabolism, Shanghai Jiao Tong University Affiliated Sixth People’s Hospital; Shanghai Clinical Center for Diabetes; Shanghai Key Clinical Center for Metabolic Disease; Shanghai Diabetes Institute; Shanghai Key Laboratory of Diabetes Mellitus, Shanghai, China

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Yufei Wang Department of Endocrinology and Metabolism, Shanghai Jiao Tong University Affiliated Sixth People’s Hospital; Shanghai Clinical Center for Diabetes; Shanghai Key Clinical Center for Metabolic Disease; Shanghai Diabetes Institute; Shanghai Key Laboratory of Diabetes Mellitus, Shanghai, China

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Yuqian Bao Department of Endocrinology and Metabolism, Shanghai Jiao Tong University Affiliated Sixth People’s Hospital; Shanghai Clinical Center for Diabetes; Shanghai Key Clinical Center for Metabolic Disease; Shanghai Diabetes Institute; Shanghai Key Laboratory of Diabetes Mellitus, Shanghai, China

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received questionnaires, a physical examination, laboratory tests and segmental fat measurements. The exclusion criteria included a history of thyroid disease with thyroxine supplement or anti-thyroid therapy; abnormal thyroid function; a history of

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Nadia Sawicka-Gutaj Department of Endocrinology, Metabolism and Internal Medicine, Poznan University of Medical Sciences, Poznan, Poland

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Ariadna Zybek-Kocik Department of Endocrinology, Metabolism and Internal Medicine, Poznan University of Medical Sciences, Poznan, Poland

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Michał Kloska Lehigh Valley Health Network, Department of Medicine, Lehigh Valley Hospital – Cedar Crest, Allentown, USA

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Paulina Ziółkowska Department of Endocrinology, Metabolism and Internal Medicine, Poznan University of Medical Sciences, Poznan, Poland

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Agata Czarnywojtek Department of Pharmacology, Poznan University of Medical Sciences, Poznan, Poland

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Jerzy Sowiński Department of Endocrinology, Metabolism and Internal Medicine, Poznan University of Medical Sciences, Poznan, Poland

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Dorota Mańkowska-Wierzbicka Department of Gastroenterology, Internal Medicine, Metabolic Diseases and Dietetics, Poznan University of Medical Sciences, Poznan, Poland

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Marek Ruchała Department of Endocrinology, Metabolism and Internal Medicine, Poznan University of Medical Sciences, Poznan, Poland

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evaluated in hyperthyroidism, hypothyroidism, and euthyroidism). Discussion The data about changes of body composition, especially in regional analysis, during anti-thyroid therapy is still scarce. This study clearly demonstrates

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Aleksandra Krygier Department of Endocrinology, Metabolism and Internal Medicine, Poznan University of Medical Sciences, Poznan, Poland

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Ewelina Szczepanek-Parulska Department of Endocrinology, Metabolism and Internal Medicine, Poznan University of Medical Sciences, Poznan, Poland

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Dorota Filipowicz Department of Endocrinology, Metabolism and Internal Medicine, Poznan University of Medical Sciences, Poznan, Poland

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Marek Ruchała Department of Endocrinology, Metabolism and Internal Medicine, Poznan University of Medical Sciences, Poznan, Poland

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remission was defined as a lack of clinical symptoms of hyperthyroidism, accompanied by full normalization of TSH and free thyroid hormones without anti-thyroid therapy or with the use of a low maintenance dose of 2.5 mg of thiamazole per day. Studied

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