The Rare Brain Tumor Consortium and Registry (RBTCR) is a global research organization established through collaboration between doctors and scientists in more than 70 centers over the world to collect medical information and biologic materials from children around the world who are diagnosed with rare brain tumors.
Rare brain tumors refer to brain tumors diagnosed in about 5-10% of children for which there exist very little information. These include tumors that are collectively called embryonal brain tumors or PNETs (primitive neuro-ectodermal brain tumors) but which are also called by different individual names: ETANTRs, medullo-epithelioma, ependymoblastoma, PNETs, sPNETs, pineoblastoma and ATRTs.
Recent research shows that at least some of these rare tumors that are called different names share similar genetic make-up and may represent the same disease. Finding effective therapies for these tumors has been challenging as they are uncommon diseases that can be difficult to diagnose, and may often be mistaken for more common types of brain tumors. By studying large numbers of patients with such rare tumors through the RBTCR, the doctors and researchers hope to develop new diagnostic methods to improve recognition of these rare diseases and to devise more specific and effective treatment for these “orphan diseases”.
- The RBTC is a global collaborative clinical and translational research initiative based at the Hospital for Sick Children in Toronto. Our goal is to accelerate therapeutic discoveries for children diagnosed with rare brain tumors by developing better molecular tools to distinguish different types and subtypes of rare brain tumors, and to develop specific therapies for each disease
- Develop a network for patients with rare brain tumors, their families and doctors to gain information and to contribute medical information and biologic materials to the study of rare brain tumors
- Develop a global research framework to accelerate the translation and application of clinical and laboratory research findings to improve the care and survival of children diagnosed with rare brain tumors
- Make rare brain tumors a curable group of diseases
- Establish and maintain a global biorepository for rare brain tumors