Australian Marrow Failure Biobank
Bone marrow failure syndromes (BMFS) are a group of diseases where the bone marrow fails to produce enough new red blood cells (RBCs), white blood cells (WBCs), and/or platelets to replace the older blood cells. Failure of blood cell production can lead to a requirement for a RBC transfusion, predisposition to life-threatening infection and bleeding and a long-term risk of transformation to aggressive blood cancers.
Approximately 5 million people are affected by BMFS each year. Reducing the burden of bone marrow failure syndromes requires research to identify new diagnostic and therapeutic strategies. The BMFS are rare diseases, and special efforts are required to ensure that basic research into bone marrow failure is not limited by lack of appropriate and representative human biological materials. To address this issue, the Australian Marrow Failure Biobank (AMFB) has been established.
WHAT IS A BIOBANK?
“Banking” is storing health information and/or blood or tissue for future research studies. A “bank” is the place where the health information and/or blood or tissue is stored for future research. In the future, other doctors and scientists may use these samples to learn about many different diseases and conditions with the goal of improving health outcomes and develop new treatments.
WHAT IS INVOLVED?
If you agree to participate in this project, you will be asked to donate blood, bone marrow and any one of: hair, nail or oral collection samples, which will be used for genetic research.
These samples are additional to what you would normally have collected in your standard-of-care. However, every effort will be made for these research samples to be collected during your routine visits and procedures.
WHO CAN PARTICIPATE?
Participants must meet the following criteria:
1. Have a diagnosis of a bone marrow failure syndrome
2. Willing and able to give informed consent
3. Willing to participate in the Aplastic Anaemia and Other Bone Marrow Failure Syndromes Registry (AAR)
Monash University Team
Dr Lauren Young
Phone: 03 9903 0115
Clinical Trial Project Manager
Ms Vanessa Fox
Phone: 1800 811 326 or 03 9903 0532
AMFB Chief Investigators
Prof Melissa Southey
Prof Erica Wood
Dr Lucy Fox
Other Project Team Members
A/Prof Zoe McQuilten
Prof Jake Shortt
Ms Helen Tsimiklis
Mr Neil Waters
Ms Robyn Sutherland