Information for Researchers
Information for researchers
The Rare Brain Tumor Consortium and Registry (RBTCR) encourages research that has tangible benefit to patients and promotes development of effective therapies for rare brain tumor diseases including:
- Clinical research that will improve patient care and best practices
- Scientific research that increases understanding of disease pathology
- Epidemiological studies to better understand the nature and burden of rare brain tumor diseases
- Clinical trials of new therapies
The RBTCR entertains two different types of request for data:
- 1) Research Proposal Submissions
- 2) Statistical Data Requests
The RBTCR releases de-identified data only. Identified data is never released.
The RBTCR imposes conditions of data release on each dataset on a case by case basis. These conditions are imposed to protect the integrity of the RBTCR, to protect the privacy of the patients registered in the RBTCR, and to ensure that the use of the data benefits the patients and families affected by neuromuscular disease in the best possible way.
Data can only be released for a specific, identifiable purpose.
Data will only be released to specific individuals or groups upon approval of ethics and material transfer agreement.
All information collected by the RBTCR will be stored in a secure computer system at the Hospital for Sick Children in Toronto, Canada for an indefinite amount of time. The computer system can only be accessed by doctors through a secure internet connection. Information cannot be transferred out of the computer system except through a hospital-approved encryption or coded process that meets all provincial and national security and ethics guidelines.