The ped-DTC Registry is designed as an umbrella-type registry. This means that, in addition to the core dataset, it can host approved linked studies that require additional disease- or research-specific data collection, without duplicating infrastructure or baseline data entry.

All patients with a confirmed diagnosis of differentiated thyroid carcinoma who were aged <18 years at diagnosis and were diagnosed, assessed, or treated at a participating center are eligible. Patients with medullary or anaplastic thyroid carcinoma are excluded.

Written informed consent is obtained from all participants and/or their parents or legal guardians prior to data entry. Consent procedures comply with local ethical requirements and the General Data Protection Regulation (GDPR).

No. Participation in the ped-DTC Registry does not mandate additional diagnostic tests, treatments, or clinic visits. All data collected reflect routine clinical care as delivered by the treating physician.

The basic dataset includes standardized data on demographics, clinical presentation, diagnostic work-up, surgical treatment, lymph node involvement, postoperative outcomes, radioactive iodine (131I) therapy, recurrence or persistent disease, adverse events, and long-term outcomes. Follow-up data are collected at predefined time points up to 10 years after diagnosis.

The registry is overseen by a multidisciplinary European expert working group and a management team in collaboration with EuRREB. These bodies supervise daily operations, data quality, annual reporting, and evaluation of research proposals.

Each participating center appoints a primary physician or site investigator who is responsible for obtaining local ethics approval, recruiting eligible patients, ensuring informed consent, and entering high-quality data into the secure web-based registry. Data quality is supported by standardized definitions, training, and ongoing oversight.

Yes. The ped-DTC Registry includes retrospective data from patients treated between January 2020 and December 2022, as well as prospective data collection from January 2023 onwards, allowing both historical analyses and long-term prospective follow-up.

Registry data are stored and managed within the EuRREB infrastructure and comply with GDPR and national data protection regulations. Requests for data access are reviewed by a Data Access Committee (DAC). Approved projects receive pseudonymized data according to a formal data-sharing agreement.

By maintaining a large, well-characterized European cohort with long-term follow-up, the registry facilitates the identification of eligible patients and participating centers for future interventional studies and clinical trials in pediatric DTC.

Researchers from participating centers may submit a detailed study proposal describing the research question, study design, and required variables. Proposals are reviewed by the ped-DTC expert working group and the EuRREB Data Access Committee before approval.

The registry aims to (1) describe the incidence, treatment strategies, outcomes, and adverse effects of pediatric DTC across Europe; (2) identify patient- and tumor-related risk factors for recurrence, persistent disease, and late effects; and (3) facilitate collaborative international research and future linked clinical studies.

Pediatric differentiated thyroid carcinoma (DTC) is rare, and individual centers treat too few patients to generate sufficiently powered studies. Although survival is excellent, treatment-related morbidity is substantial. The ped-DTC Registry was established to enable uniform, prospective, international data collection to better understand disease behavior, identify risk factors for recurrence and treatment-related complications, and support the development of more personalized treatment and follow-up strategies.

The ped-DTC Registry is part of EuRREB. It provides a secure, standardized platform for collecting high-quality data on rare pediatric thyroid cancers across Europe. The registry enables collaboration between centers and aims to improve care and outcomes for children and adolescents with DTC.

The registry collects standardized clinical data to better understand disease behavior, treatment outcomes, and long-term effects of pediatric DTC. By pooling data across European centers, the registry helps develop more personalized and optimized care for patients.

Because pediatric DTC is rare, pooling data across Europe is essential to achieve robust research results. Multi-center collaboration allows accurate studies and ensures that centers can contribute to and lead research projects, supporting future European and pediatric-adult linked studies.

Children and adolescents aged 18 years or younger at diagnosis with histologically confirmed well-differentiated thyroid carcinoma, who were diagnosed with pediatric differentiated thyroid carcinoma (DTC) on or after January 1, 2020, are eligible. Patients with medullary or anaplastic thyroid carcinoma are not included.

Written informed consent is required from you or your parent/legal guardian before your data are included in the registry. Participation is voluntary, and you can withdraw at any time without affecting your care. You may participate in the core registry only; any linked study requires separate consent, and you will be asked for permission before your data are included.

Participation in the registry does not change your medical care. All information collected reflects routine clinical care, and no extra tests or visits are required.

The registry collects information on demographics, preoperative results, surgical treatment, postoperative outcomes, radioactive iodine therapy, and long-term follow-up. All data are entered securely via a web-based system.

Data from the core registry may be used in approved research studies in anonymized form. Linked studies that require additional information or data collection will only include your data if you provide separate consent. Results from studies are shared via scientific publications and annual reports.

Your data are stored securely in compliance with GDPR and national data protection regulations. All research data are pseudonymized to protect your identity.