Development of a pediatric differentiated thyroid carcinoma registry within the EuRRECa project: rationale and protocol

Clement, S. C. et al. (2023) Development of a pediatric differentiated thyroid carcinoma registry within the EuRRECa project: rationale and protocol. Endocrine Connections, 12(3), e220306. (doi: 10.1530/ec-22-0306) (PMID:37931414) (PMCID:PMC9986407)

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.

• Item Type: Articles
• Additional Information: Funding: SFA and ALP are supported by the European Union’s Health Programme (2014–2020) on the EuRRECa project ‘777215/EuRRECa’ and the EuRR-Bone project ‘946831/EuRR-Bone’. The EuRRECa project is also grateful to the European Society of Endocrinology and the European Society for Paediatric Endocrinology for funding support.
• Status: Published
• Refereed: Yes
• Glasgow Author(s) Enlighten ID: Ahmed, Professor Syed Faisal
• Authors: Clement, S. C., Visser, W. E., Lebbink, C. A., Albano, D., Claahsen-van der Grinten, H. L., Czarniecka, A., Dias, R. P., Dierselhuis, M. P., Dzivite-Krisane, I., Elisei, R., Garcia-Burillo, A., Izatt, L., Kanaka-Gantenbein, C., Krude, H., Lamartina, L., Lorenz, K., Luster, M., Navardauskaitė, R., Negre Busó, M., Newbold, K., Peeters, R. P., Pellegriti, G., Piccardo, A., Priego, A. L., Redlich, A., de Sanctis, L., Sobrinho-Simões, M., van Trotsenburg, A. S. P., Verburg, F. A., Vriens, M., Links, T. P., Ahmed, S. F., and van Santen, H. M.
• College/School: College of Medical Veterinary and Life Sciences > School of Medicine, Dentistry & Nursing
• Journal Name: Endocrine Connections
• Publisher: Bioscientifica
• ISSN: 2049-3614
• ISSN (Online): 2049-3614
• Published Online: 10 January 2023
• Copyright Holders: Copyright © The authors 2023
• First Published: First published in Endocrine Connections 12(3):e220306
• Publisher Policy: Reproduced under a Creative Commons license