Rare Embryonal Tumors of the Central Nervous System: International Registry

Status: Recruiting
Location: See all (11) locations...
Study Type: Observational
SUMMARY

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.

Eligibility
Participation Requirements
Sex: All
Minimum Age: 1 day
Maximum Age: 25
Healthy Volunteers: f
View:

• 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

Locations
Other Locations
Armenia
Hematology Center named after prof. R. Yeolyan
RECRUITING
Yerevan
Canada
Children's Hospital of Eastern Ontario (CHEO)
RECRUITING
Ottawa
Hungary
Semmelweis University
RECRUITING
Budapest
India
National Cancer Institute, All India Institutes of Medical Sciences
RECRUITING
New Delhi
Islamic Republic of Iran
Oncology Department of Golestan hospital
RECRUITING
Tehran
Italy
IRCCS Istituto Ospedale Pediatrico Bambino Gesù
RECRUITING
Rome
Mexico
Hospital Civil de Guadalajara Dr. Juan I. Menchaca
RECRUITING
Guadalajara
Centro Médico ABC
RECRUITING
Mexico City
Peru
Hospital Nacional Alberto Sabogal Sologuren - EsSalud
RECRUITING
Bellavista
Hospital Nacional Edgardo Rebagliati Martins
RECRUITING
Lima
Taiwan
China Medical University Children's Hospital
RECRUITING
Taichung
Contact Information
Primary
Julieta Hoveyan, MD
julia.hoveyan95@gmail.com
+374 10 28 38 00
Backup
Ruzanna Papyan, MD
ruzannapapyan92@gmail.com
+374 10 28 38 00
Time Frame
Start Date: 2023-02-01
Estimated Completion Date: 2033-02
Participants
Target number of participants: 300
Sponsors
Leads: Immune Oncology Research Institute

This content was sourced from clinicaltrials.gov