2026-04-13T07:11:50Zhttps://recercat.cat/oai/requestoai:recercat.cat:11351/96582025-10-24T10:30:00Zcom_2072_378070com_2072_378040col_2072_378092
2025-10-24T10:30:00Z
urn:hdl:11351/9658
Development of a pediatric differentiated thyroid carcinoma registry within the EuRRECa project: rationale and protocol
Clement, Sarah
Visser, W. Edward
Lebbink, C A
Albano, D
Claahsen - van der Grinten, Hedi L.
Czarniecka, Agnieszka
García Burillo, Amparo
Infants
Tiroide - Càncer - Diagnòstic
Tiroide - Càncer - Tractament
Malalties - Notificació
DISEASES::Neoplasms::Neoplasms by Site::Endocrine Gland Neoplasms::Thyroid Neoplasms
HEALTH CARE::Health Services Administration::Patient Care Management::Disease Management
PUBLIC HEALTH::Epidemiology and Biostatistics::Biostatistics::Information Storage and Retrieval::Diseases Registries
NAMED GROUPS::Persons::Age Groups::Child
ENFERMEDADES::neoplasias::neoplasias por localización::neoplasias de las glándulas endocrinas::neoplasias de la tiroides
ATENCIÓN DE SALUD::administración de los servicios de salud::gestión de la atención al paciente::tratamiento de las enfermedades
SALUD PÚBLICA::epidemiología y bioestadística::bioestadística::almacenamiento y recuperación de la información::registros de enfermedades
DENOMINACIONES DE GRUPOS::personas::Grupos de Edad::niño
Registry; Thyroid carcinoma; Childhood
Registro; Carcinoma de tiroides; Infancia
Registre; Carcinoma de tiroides; Infància
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.
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.
2025-10-24T10:30:00Z
2025-10-24T10:30:00Z
2023-06-06T07:40:10Z
2023-06-06T07:40:10Z
2023-03
info:eu-repo/semantics/article
info:eu-repo/semantics/publishedVersion
http://hdl.handle.net/11351/9658
Endocrine Connections;12(3)
https://doi.org/10.1530/EC-22-0306
Attribution-NonCommercial-NoDerivatives 4.0 International
http://creativecommons.org/licenses/by-nc-nd/4.0/
info:eu-repo/semantics/openAccess
Bioscientifica
Scientia