Pediatric Differentiated Thyroid Carcinoma

Pediatric Differentiated Thyroid Carcinoma

The condition specific module was launched in January 2024 and is the work of the Pediatric Differentiated Thyroid Carcinoma Study Group.

Background and overall aim

The European Pediatric Differentiated Thyroid Carcinoma (ped-DTC) registry aims to collect clinical data for all patients with a confirmed diagnosis of DTC<18 years of age who have been diagnosed, assessed, or treated at a participating site. As pediatric DTC is a rare disease, no single study site is in the position to obtain clinical data in sufficient numbers to conduct conclusive studies. The European ped-DTC registry is a cooperative effort that will provide large enough clinical datasets to answer questions conclusively by conducting well powered studies. The registry will offer detailed information about each patient regarding his/her demographic details and clinical information and will serve in the future as the umbrella for linked studies.

Objectives

To collect prospective data on demographics, tumor characteristics, given treatment and outcome of pediatric DTC patients, aiming:

1. To increase knowledge on prevalence of pediatric DTC, its treatment across Europe and its outcome. With the registry we will:

  • Evaluate the incidence and outcome (i.e. recurrence/persistent disease, death of disease and adverse effects of given treatment) of pediatric DTC in Europe.
  • Identify the impact (risk factor analysis) of several patient- and tumor-related characteristics on outcome of pediatric DTC, i.e. recurrence rate / persistent disease and death of disease.

2. To perform collaborative international studies. With this registry we will:

  • Create a European pediatric DTC cohort that will provide researchers and clinicians access to accurate, validated, standardized, well-characterized patient data.
  • Facilitate enrollment into linked studies/clinical trials.

Want to start using the module? Get access to the Core Registry and read the instructions on how to use the module.

The full data dictionary can be downloaded here (, 61 KB).

After entering the patient with Papillary or Folliculary thyroid cancer in the Core registry, the Pediatric Differentiated Thyroid Carcinoma module appears automatically and is ready to use.

If you have questions or interest in joining the working group, please contact us on registries@lumc.nl.

The module collects information on

  • Anamnestic data
  • Surgical treatment
  • Histology and genetic findings
  • Radioiodine therapy
  • Post-treatment outcomes and recurrences

Publications