About the registry
About the registry
Brain tumors arising in children are made up of many different types of diseases that need different types of treatment. Although research has really advanced for more common types of pediatric brain tumors, very little is known regarding rare types of pediatric brain tumors which include tumors called PNETs, ATRTs. As rare brain tumors may not be easily diagnosed, patients may receive too much, too little or the incorrect type of treatments. To accelerate research into rare tumors, doctors and researchers at the RBTC have established a database or registry that will allow the collection of medical information and biologic material from patients diagnosed with rare brain tumors across the globe. This will allow them to study the genetic features of various rare tumors, features of patients that have such tumors and how they benefited or not from different types of treatment. In addition by studying large numbers of tumors that have the same genetic make-up, researchers will be able to discover novel types of therapies that can target specific classes of rare tumors.
How can my child join the Registry?
Patients, their families or their doctors can provide information about an individual’s disease to the RBTC registry. Joining the registry is voluntary and free. You or your child will not receive any money for participating in the RBTCR. No procedures or treatments are required for your child to be part of the RBTCR.
If you wish to enter your child’s information into the registry or have his tumor and/or blood sample banked with the RBTCR, you will need to provide a written permission or informed consent that will allow your doctor /hospital to send relevant medical information and/or bio-materials to the RBTCR. All information provided to the RBTCR is confidential and only anonymized data will be shared with doctors and scientists in the RBTCR for research related purposes. Biomaterials banked with the RBTCR will only be used for research purposes by approved investigators.
Benefits of joining the Registry
The registry has been set-up to improve the treatment of all children diagnosed with rare brain tumors by facilitating dialogue between different health care professionals who care for such patients. The larger the number of patients that enroll in the registry, the more information and materials will be available for doctors and scientist to study these rare diseases and the greater the chances that RBTCR studies will lead to better understanding of how these tumors arise and lead to discoveries of new, more effective treatments for these rare tumors. However, there is no guarantee that enrolling your child in the RBTCR will provide direct benefit to your child.
Some possible benefits from enrolling your child in the RBTCR include:
- In some cases where newer diagnostic tools have been developed for specific rare tumors, the RBTCR investigators may be able to facilitate confirmatory diagnostic testing
- The RBTCR website will provide updated information as they become available regarding research on treatments for rare tumors, and clinical trials that may apply to your child
- Physicians associated with the RBTCR may be able available for consultation or provide advice to your child’s physician regarding treatment options for your child