For Patients & Families

About the ped-DTC Registry

The ped-DTC Registry collects information about children and adolescents with differentiated thyroid carcinoma (DTC) from hospitals across Europe. Because this type of thyroid cancer is rare, doctors and researchers work together to better understand the disease, improve treatments, and support long-term care.

Who Can Participate?

Children and adolescents may be included in the registry if they:

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Were diagnosed with differentiated thyroid carcinoma

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Aged 18 years or younger of age at diagnosis

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Are being treated or followed at a participating hospital (from 1 January 2020 onwards)

Meet our team

Discover How the Registry Works

What Data Is Collected?

Doctors securely enter important medical information that helps researchers understand how pediatric thyroid cancer develops and responds to treatment. The information collected may include:

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Diagnosis and cancer type

Details about the specific form of thyroid cancer, how it was discovered, and any initial test results.

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Treatments received

Information on surgery, radioactive iodine therapy, medication, and other forms of care, including timelines and outcomes.

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Follow-up and long-term outcomes

Ongoing care information, such as check-ups, recurrence monitoring, hormone therapy, and overall health after treatment.

All information is stored in a secure European platform (EuRREB) and is pseudonymized.

This means: your child’s name and personal identity are never shared, data are stored under a coded number, only approved medical researchers can use this information, and only for ethical studies.

The goal is to learn from each child’s journey — safely, respectfully, and always under strict privacy rules.

How participation works

We welcome questions, collaboration requests, and inquiries about participation in the ped-DTC Registry. Whether you are a family member, clinician, or researcher, we are here to support you. Contact details: s.c.clement-2@umcutrecht.nl, department of pediatric endocrinology, Wilhelmina Children’s Hospital, PO box 85090, Utrecht, The Netherlands

For questions regarding METC, documentation, informed consent forms, or contracts related to EuRREB, please contact the registry team at registries@lumc.nl.

Why participation matters

When families choose to take part in the ped-DTC Registry, they contribute to something greater than a single medical record. Participation helps build a shared understanding of pediatric thyroid cancer — knowledge that can improve care for many children in the future.

By joining the registry, families help to:

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Improve future treatments and follow-up care

Real patient experiences help doctors develop better treatment plans and long-term care strategies.

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Support international collaboration

Hospitals across Europe can learn from each other, compare results, and work together to provide the best possible care.

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Enable research and new discoveries

The data collected today may lead to important studies, new guidelines, and breakthroughs that benefit future patients and families.

Frequently asked questions

What is the ped-DTC Registry?

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.

What are the objectives of the registry?

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.

Why is collaboration important?

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.

Who can be included?

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.

Do I need to give consent, and can I withdraw?

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.

How does participation affect my care?

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.

What data are collected?

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.

How can my data be used for research?

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.

How is my privacy protected?

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

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