International registry for rare embryonal tumors of the central nervous system

Is this trial a fit for you?

A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.

What this trial studies

This international registry aims to create a comprehensive database of pediatric and young adult patients diagnosed with rare embryonal tumors of the central nervous system. It focuses on documenting clinical presentations, diagnostic challenges, treatment regimens, and patient outcomes for these rare tumors, which include ETMR, FOXR2-activated CNS neuroblastoma, and others. The registry seeks to evaluate prognostic factors and identify gaps in diagnosis and treatment, particularly in low- and middle-income countries where data is scarce. By gathering this information, the study aims to improve understanding and management of these rare conditions.

Why it matters

Who can join: the full rules

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

Where it's running

• 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

Study contacts

• Principal investigator: Julieta Hoveyan, MD — Immune Oncology Research Institute, Yerevan, Armenia
• Study coordinator: Julieta Hoveyan, MD
• Email: julia.hoveyan95@gmail.com
• Phone: +374 10 28 38 00

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How to take part

1. Review the eligibility criteria above with your treating physician.
2. Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
3. Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.