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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.

Open access