Worldwide registry of rare embryonal brain tumors in young people

AI summary

From the trial's eligibility criteria. Machine-read from the registry text on this page, so it can be wrong. The registry text below and the trial team decide who can take part.

This registry collects information on children and young adults with rare embryonal tumors of the central nervous system, diagnosed since 01.01.2010.

Age

From 1 Day to 25 Years

Sex

All sexes can join.

Disease stage

Rare embryonal tumors of the central nervous system: ETMR (including ETANTR, ependymoblastoma and medulloepithelioma), FOXR2-activated CNS neuroblastoma, cribriform neuroepithelial tumor, and CNS tumor with BCOR internal tandem duplication. Neuroblastoma and ganglioneuroblastoma with no molecular genetic tests available are also included.

Biomarker or test result

FOXR2 activation or BCOR internal tandem duplication for some tumor types.

Main reasons for not taking part

• CNS metastases of extracranial embryonal tumors

The registry criteria, word for word

Check if you might fit

Answer for yourself. This is not a decision: only the study team can say whether you can take part.

• How old is the patient who may join a trial?Under 1 year1 to 11 years12 to 17 years18 to 25 yearsOver 25 years
• What type of cancer has the patient been diagnosed with?Leukemia (cancer of the blood or bone marrow)Lymphoma (cancer of the lymph system)Brain or spinal cord tumorBone or soft tissue tumor, such as Ewing sarcoma or rhabdomyosarcomaNeuroblastoma, a kidney tumor, or another tumor not listed above (a cancer that forms a lump, such as a liver tumor)

What the trial wants to find out

Central nervous system (CNS) tumors are the most common solid malignancies among children. Although some types of CNS tumors like medulloblastomas and low-grade gliomas are widespread and well-studied, there is a huge number of rare diseases that need further research. This international registry aims to establish a large multicenter database of pediatric and young adult patients with rare embryonal tumors of the central nervous system and describe the clinical presentations, diagnostics, treatment regimens, and outcomes. Embryonal tumors with multilayered rosettes (ETMR), FOXR2-activated CNS neuroblastoma, cribriform neuroepithelial tumor, and CNS tumor with BCOR internal tandem duplication are extremely rare embryonal tumors some of which were first described in the last edition of the World Health Organization (WHO) Classification of Tumors of the Central Nervous System. Objectives of the registry are 1) to evaluate prognostic factors, 2) to identify diagnostic and treatment gaps, 3) to investigate the characteristics and outcome of the disease with different treatment regimens, and 4) to generate data-based prospective diagnostic and treatment recommendations.