Worldwide registry of rare embryonal brain tumors in young people
Gathers data on young people with rare embryonal brain tumors.
Plain-language title generated from the registry record
Registry title: Rare Embryonal Tumors of the Central Nervous System: International Registry
Key facts
- Where
- Budapest, HungarySee the site
AI summary: who the study is looking for
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
Read by machine on 12 November 2026.
Could this be for you?
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?
- What type of cancer has the patient been diagnosed with?
Source: NCT05711992, who can take part
Where in Hungary
- Semmelweis UniversityBudapest, HungaryContact: Miklós Garami, MD, MSc, PhDTaking people
Questions to ask the study team
- How often do I need to come in, and for how long each time?
- Are travel costs paid?
- Can I keep my own doctor?
- What happens if I want to stop?
Contact the study team: see the registry record → Contacts and Locations
Print a page for my doctorTrial details
- Who runs it
- Immune Oncology Research Institute
- Trial code
- NCT05711992
- Record updated
- 8 May 2025
- Original description
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.Read full original descriptionShow less
Rare Embryonal Tumors of the Central Nervous System: International Registry
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.
Inclusion: Patients diagnosed with rare embryonal tumors of CNS since 01.01.2010:; ETMR (including embryonal tumor with abundant neuropil and true rosettes (ETANTR), ependymoblastoma (EBL) and medulloepithelioma (MEPL) which were previously classified as CNS-PNETs); FOXR2-activated CNS neuroblastoma; cribriform neuroepithelial tumor; CNS tumor with BCOR internal tandem duplication; all patients diagnosed with neuroblastoma and ganglioneuroblastoma with no molecular genetic tests available; Patients ≤ 25 years of age; Signed informed consent form for prospective patients ≥ 18 years of age; Signed parental permission and child assent forms for prospective patients < 18 years of age.
Exclusion: CNS metastases of extracranial embryonal tumors.