Development of a pediatric differentiated thyroid carcinoma registry within the EuRRECa project
| Autor: | S C Clement, W E Visser, C A Lebbink, D Albano, H L Claahsen-van der Grinten, A Czarniecka, R P Dias, M P Dierselhuis, I Dzivite-Krisane, R Elisei, A Garcia-Burillo, L Izatt, C Kanaka-Gantenbein, H Krude, L Lamartina, K Lorenz, M Luster, R Navardauskaitė, M Negre Busó, K Newbold, R P Peeters, G Pellegriti, A Piccardo, A L Priego, A Redlich, L de Sanctis, M Sobrinho-Simões, A S P van Trotsenburg, F A Verburg, M Vriens, T P Links, S F Ahmed, H M van Santen |
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| Přispěvatelé: | Institut Català de la Salut, [Clement SC] 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. [Visse WE] Academic Center For Thyroid Disease, Department of Internal Medicine, Erasmus Medical Center, Rotterdam, The Netherlands. [Lebbink CA] Department of Pediatric Endocrinology, Wilhelmina Children’s Hospital/ University Medical Center Utrecht, Utrecht, The Netherlands. Princess Máxima Center for Pediatric Oncology, Utrecht, The Netherlands. [Albano D] Department of Nuclear Medicine, University of Brescia and Spedali Civili of Brescia, Brescia, Italy. [Claahsen-van der Grinten HL] Department of Pediatrics, Radboud University Medical Center, Amalia Children's Hospital, Nijmegen, The Netherlands. [Czarniecka A] The Oncologic and Reconstructive Surgery Clinic, M. Sklodowska-Curie National Research Institute of Oncology Gliwice Branch, Gliwice, Poland. [Garcia-Burillo A] Servei de Medicina Nuclear, Vall d'Hebron Hospital Universitari, Barcelona, Spain, Vall d'Hebron Barcelona Hospital Campus, Damage and Repair in Cancer Development and Cancer Treatment (DARE), Guided Treatment in Optimal Selected Cancer Patients (GUTS) |
| Jazyk: | angličtina |
| Rok vydání: | 2023 |
| Předmět: |
Health Services Administration::Patient Care Management::Disease Management [HEALTH CARE]
epidemiología y bioestadística::bioestadística::almacenamiento y recuperación de la información::registros de enfermedades [SALUD PÚBLICA] Endocrinology Diabetes and Metabolism administración de los servicios de salud::gestión de la atención al paciente::tratamiento de las enfermedades [ATENCIÓN DE SALUD] Vascular damage Radboud Institute for Molecular Life Sciences [Radboudumc 16] Tiroide - Càncer - Tractament personas::Grupos de Edad::niño [DENOMINACIONES DE GRUPOS] Persons::Age Groups::Child [NAMED GROUPS] registry thyroid carcinoma DTC Endocrinology All institutes and research themes of the Radboud University Medical Center SDG 3 - Good Health and Well-being Tiroide - Càncer - Diagnòstic Internal Medicine Epidemiology and Biostatistics::Biostatistics::Information Storage and Retrieval::Diseases Registries [PUBLIC HEALTH] Infants Neoplasms::Neoplasms by Site::Endocrine Gland Neoplasms::Thyroid Neoplasms [DISEASES] Malalties - Notificació neoplasias::neoplasias por localización::neoplasias de las glándulas endocrinas::neoplasias de la tiroides [ENFERMEDADES] childhood |
| Zdroj: | Scientia 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 & van Santen, H M 2023, ' Development of a pediatric differentiated thyroid carcinoma registry within the EuRRECa project : rationale and protocol ', Endocrine Connections, vol. 12, no. 3, e220306 . https://doi.org/10.1530/EC-22-0306 Endocrine Connections, 12, 3, pp. 1-9 Endocrine Connections, 12, 1-9 Endocrine Connections, 12(3):e220306. BIOSCIENTIFICA LTD |
| ISSN: | 2049-3614 |
| DOI: | 10.1530/EC-22-0306 |
| Popis: | 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. |
| Databáze: | OpenAIRE |
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