Condition: Embryonal Tumor · Sponsor: Immune Oncology Research Institute
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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.
This description comes directly from the study's public registry record.
Julieta Hoveyan, MD · +374 10 28 38 00 · julia.hoveyan95@gmail.com
Ruzanna Papyan, MD · +374 10 28 38 00 · ruzannapapyan92@gmail.com
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Inclusion Criteria: * 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 Criteria: • CNS metastases of extracranial embryonal tumors
Reproduced word-for-word from the public registry record — the study team can answer questions about it.
| Hematology Center named after prof. R. Yeolyan | Yerevan, Armenia | Recruiting |
| Children's Hospital of Eastern Ontario (CHEO) | Ottawa, Canada | Recruiting |
| Semmelweis University | Budapest, Hungary | Recruiting |
| National Cancer Institute, All India Institutes of Medical Sciences | New Delhi, India | Recruiting |
| Oncology Department of Golestan hospital | Tehran, Iran | Recruiting |
| IRCCS Istituto Ospedale Pediatrico Bambino Gesù | Rome, Italy | Recruiting |
| Hospital Civil de Guadalajara "Dr. Juan I. Menchaca" | Guadalajara, Mexico | Recruiting |
| Centro Médico ABC | Mexico City, Mexico | Recruiting |
| Hospital Nacional Alberto Sabogal Sologuren - EsSalud | Bellavista, Peru | Recruiting |
| Hospital Nacional Edgardo Rebagliati Martins | Lima, Peru | Recruiting |
| China Medical University Children's Hospital | Taichung, Taiwan | Recruiting |
This study lists sites in the areas below. Each link shows other recruiting studies near that city, from the public registry record.
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