About the ASSET Registry Study: Acute lymphoblastic leukaemia (ALL) is the commonest childhood cancer. While chemotherapy is an effective treatment for ALL, it can lead to toxicities in some patients. Toxicities are negative and undesirable side effects associated with treatment. Severe toxicities can include things like venous thromboembolism (blood clots), neurotoxicity (problems with the brain and nerves), pancreatitis (inflammation of the pancreas) and bone toxicity (fractures or severe bone pain). These side effects are not always easy to predict. More research is needed to understand why some children have a higher risk of developing toxicities than others. Some genetic factors may be related to whether toxicities will be experienced or not. Identifying these factors may help us to determine whether an individual will develop toxicities, as well as predict the treatment success.
The ASSET Registry Study is the first Australasian Registry Study to capture children who are affected by serious treatment-related toxicities in a coordinated manner. The study aims to help us determine how many children experience toxicities during their ALL treatment. It also involves evaluating genetic alterations that may help us identify children at highest risk of toxicity. This information will help us develop better individualised treatments and preventive strategies in the future. The ASSET Registry study investigates four common and potentially life-threatening toxicities that may happen during ALL treatment: venous thromboembolism (blood clots), pancreatitis (inflammation of the pancreas), neurotoxicity (problems with the brain and nerves) and bone toxicity (problems with the bones, such as bone decay from poor blood circulation and broken bones).
What does participation in the ASSET Registry Study involve?
If young people/parents agree to participate in the ASSET study, their/their child’s doctor will collect baseline information, including name, date of birth, details of their/their child’s medical history (i.e., any diseases they had in the past, as well as details about their ALL), the treatment received and whether they have experienced any toxicities.
This information will then be added to the ASSET Registry to help us understand how many children/young people being treated for ALL experience toxicity from treatment.
A sample of 5ml (roughly a teaspoon) of blood or bone marrow will be collected once the child/young person child is in "remission", meaning when the leukaemia has responded to treatment and is almost undetectable in the bone marrow. This sample will not require an additional blood or bone marrow collection, as they will be taken at the same time as other routine medical tests. The doctor may also suggest sending any remaining sample from your/your child’s diagnosis to be banked with the ASSET Registry. With this sample, we will investigate genetic factors that may be related to the risk of developing these toxicities. We are interested in “genetic polymorphisms”, which are minor changes in individuals’ genetic material. In most cases, these minor genetic changes do not cause any problems. In some cases, these minor genetic changes may have a role in causing the toxicities, but more research is needed.