For a researcher applying to gain access to the database, the following requirements will be essential:
- The researcher must demonstrate that there are adequate resources, including funding, to complete the project satisfactorily. That will usually mean that there is a research grant, which means in turn that the project has been subject to strict scientific scrutiny. The project must have been examined by appropriately qualified scientists and judged to be of good scientific merit.
- The Human Research Ethics Committee of the researcher’s hospital, university or institution must have approved the project.
- When these requirements are satisfied, a decision as to whether to grant access to the Rare Tumor Database will be made by BioGrid Australia, which is ultimately responsible for the proper maintenance and use of the database.
It is possible that information about the study might be published. However, no information that might identify you will appear in these publications.
In accordance with relevant Australian and/or Victorian privacy and other relevant laws you have the right to access the information collected and stored by the researchers about you. You also have the right to request that any information with which you disagree be corrected. Please contact one of the researchers named below if you would like to access your information.
Since this database can help research, which by its very nature, is experimental and can take many years your data will be kept indefinitely unless you choose to notify the researchers that you wish to withdraw your data from the project.