A field that is continually shifting, the classification of embryonal and sarcomatous central nervous system (CNS) tumors has undergone significant remodeling in the past ten years. The incorporation of molecular biomarkers into the classification system is the primary driver of this efficient approach.
Although there are a number of case reports and review articles available from high-income countries the data from developing countries is extremely limited. There are no standard treatment regimens for these tumors and the survival rates are low. Some types of rare embryonal tumors like FOXR2-activated CNS neuroblastoma and CNS tumor with BCOR internal tandem duplication were first described in the fifth edition of the WHO Classification of Tumors of the Central Nervous System, published in 2021.
Our team at the IMMONC launched the International Registry of the Rare Embryonal Tumors of the Central Nervous System. The primary aim is to establish a large multicenter database of pediatric and young adult patients with rare embryonal tumors of the central nervous system and describe the demographic and clinical characteristics of these tumors. Based on the data collected, we will evaluate prognostic factors, identify diagnostic and treatment gaps and generate data-based prospective diagnostic and treatment recommendations, especially for LMICs. The Registry is led by Julia Hoveyan, MD, and Ruzanna Papyan, MD.
Principle Investigators:
Julieta Hoveyan, MD
Immune Oncology Research Institute, Yerevan, Armenia
Hematology Center after Prof. R.H. Yeolyan, Yerevan, Armenia
Ruzanna Papyan, MD
Immune Oncology Research Institute, Yerevan, Armenia
Hematology Center after Prof. R.H. Yeolyan, Yerevan, Armenia
Yerevan State Medical University, Yerevan, Armenia
Co-investigators:
Gevorg Tamamyan, MD, Ph.D., DSc
Immune Oncology Research Institute, Yerevan, Armenia
Hematology Center after Prof. R.H. Yeolyan, Yerevan, Armenia
Yerevan State Medical University, Yerevan, Armenia
Samvel Bardakhchyan, MD, Ph.D.
Immune Oncology Research Institute, Yerevan, Armenia
Hematology Center after Prof. R.H. Yeolyan, Yerevan, Armenia
Registry coordinator:
Karen Bedirian, MPH
Immune Oncology Research Institute, Yerevan, Armenia
Hematology Center after Prof. R.H. Yeolyan, Yerevan, Armenia
Statistical office:
Arusyak Ivanyan, MD
Hematology Center after Prof. R.H. Yeolyan, Yerevan, Armenia
Sponsor:
Immune Oncology Research Institute
Participating centers:
Armenia - Hematology Center named after Prof. R. Yeolyan, Yerevan, Armenia
Investigators:
Julieta Hoveyan, MD - [email protected]
Ruzanna Papyan, MD - [email protected]
Hungary - Semmelweis University, Budapest, Hungary
Investigators:
Miklos Garami, MD., MSc., PhD - [email protected]
Edit Bruckner, MD - [email protected]
Peru - Hospital Nacional Edgardo Rebagliati Martins, Peru
Investigators:
Ana Maria Glória Paredes Guerra, MD - [email protected]
Iran - Oncology Department of Golestan Hospital, Tehran, Iran
Investigators:
Azim Mehrvar, MD -[email protected]
Maryam Tashvighi, MD - [email protected]
Narjes Mehrvar, PhD - [email protected]
Peru - Hospital Nacional Alberto Sabogal Sologuren - Essalud, Peru
Omar Reyes Cruzado, MD - [email protected]
Sofia Aguilar Moreno, MD
Mexico - Hospital Civil de Guadalajara “Dr. Juan I. Menchaca” - Guadalajara, Jalisco, Mexico
Regina Mallinalli Navarro Martin Del Campo, MD - [email protected]
Mexico - Centro Médico ABC
Alejandra Jimena García Velázquez, MD - [email protected]
India - National Cancer Institute, All India Institutes of Medical Sciences - New Delhi, India
Supriya Mallick, MD - [email protected]
Akash Kumar, MD
More information about this study can be found at
Rare Embryonal Tumors of the Central Nervous System: International Registry - Full Text View - ClinicalTrials.gov
About IMMONC
Immune Oncology Research Institute (IMMONC) is dedicated to advancing research aimed at preventing, treating, and ultimately curing cancer while making these innovations accessible to those who need them. If you're interested in joining our team, please feel free to contact us at [email protected] or at +374-41 310-048.