For many years doctors and hospitals have collected information on different diseases and the way in which they are diagnosed and treated for the purposes of research. Most of this information is stored on individual computer databases.
BioGrid Australia provides the technology to link together the anonymous patient information from all of these different databases in a way that maintains the privacy of the patient and the security of the information.
This means that information about greater numbers of patients can be combined which leads to more accurate and powerful research. For more information about BioGrid Australia please visit the website at www.biogrid.org.au
Watch the animation: What is BioGrid Australia?
Effective research into rare tumors is difficult due to the small numbers of each type of tumor diagnosed each year. Usually we need to study large numbers of cases in order to identify patterns that tell us important information about how a tumor behaves or what kind of treatments work best. Most researchers only have access to cases at their own hospital or maybe within their own country. By creating a registry accessible to patients on the internet we can bring together data provided by individuals from all over the world, giving researchers access to a greater wealth of information.
When a researcher wants to study a certain rare tumor using the information in the registry they apply to BioGrid Australia with a research question. A team of doctors and scientists at BioGrid will review their request and determine whether it is an important question that needs to be answered to improve the care of patients with rare tumors. If it is approved then the researcher will be given access to the relevant information that has been collected through the registry.
Remember they can only access your information to the extent to which you have provided permission in the Participant Information and Consent Form.