@article{949fbf5c30d14b118b161e3f05787932,
title = "Development of a pediatric differentiated thyroid carcinoma registry within the EuRRECa project: rationale and protocol",
abstract = "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.",
keywords = "DTC, childhood, registry, thyroid carcinoma",
author = "Clement, {S. C.} and Visser, {W. E.} and Lebbink, {C. A.} and D. Albano and {Claahsen-van der Grinten}, {H. L.} and A. Czarniecka and Dias, {R. P.} and Dierselhuis, {M. P.} and I. Dzivite-Krisane and R. Elisei and A. Garcia-Burillo and L. Izatt and C. Kanaka-Gantenbein and H. Krude and L. Lamartina and K. Lorenz and M. Luster and R. Navardauskaitė and {Negre Bus{\'o}}, M. and K. Newbold and Peeters, {R. P.} and G. Pellegriti and A. Piccardo and Priego, {A. L.} and A. Redlich and {de Sanctis}, L. and M. Sobrinho-Sim{\~o}es and {van Trotsenburg}, {A. S. P.} and Verburg, {F. A.} and M. Vriens and Links, {T. P.} and Ahmed, {S. F.} and {van Santen}, {H. M.}",
note = "Funding Information: The ped-DTC registry will be established and managed by the EuRRECa (https://eurreca.net/) which was launched in February 2018 and funded by the EU Health Programme with additional support from the European Society for Pediatric Endocrinology and the European Society of Endocrinology. The EuRRECa project was initially developed to support the European Reference Network for Rare Endocrine Conditions (Endo-ERN) but is open to use by the wider endocrine community. Endo-ERN is the largest ERN with 111 reference centers from 28 member states that are estimated to care for over 60,000 patients (https://endo-ern.eu/about/reference-centre). Endo-ERN includes 36 groups of conditions with orphacodes that are organized into eight {\textquoteleft}main thematic groups{\textquoteright}. It aims to maximize the opportunity for patients, healthcare professionals, and researchers to participate and use high‐quality, patient-centered registries for rare endocrine conditions that are covered within Endo‐ERN. The EuRRECa project offers two platforms for patients{\textquoteright} registration. The electronic reporting system (e-REC) provides a better understanding of the occurrence of the conditions covered by Endo-ERN. To date, 31 participating centers have reported over 1850 cases of non-metastatic thyroid carcinoma; of these, 64 cases were pediatric patients. Funding Information: SFA and ALP are supported by the European Union{\textquoteright}s Health Programme (2014–2020) on the EuRRECa project {\textquoteleft}777215/EuRRECa{\textquoteright} and the EuRR-Bone project {\textquoteleft}946831/EuRR-Bone{\textquoteright}. The EuRRECa project is also grateful to the European Society of Endocrinology and the European Society for Paediatric Endocrinology for funding support. Publisher Copyright: {\textcopyright} 2023 The authors Published by Bioscientifica Ltd.",
year = "2023",
month = mar,
day = "1",
doi = "https://doi.org/10.1530/EC-22-0306",
language = "English",
volume = "12",
journal = "Endocrine Connections",
issn = "2049-3614",
publisher = "BioScientifica",
number = "3",
}