SAIL

Although it is possible to cure 9 out of 10 children with the commonest type of blood cancer (leukaemia), unfortunately there are some children with leukaemia who cannot be cured. These cases are called “high-risk” leukaemia and often do not respond well to treatment. Therefore, a better understanding of high-risk leukaemia is needed in order to cure every child with leukaemia.

One type of high-risk leukaemia is infant acute lymphoblastic leukaemia (ALL) which occurs in babies less than a year old, where with current treatments only around 50% of babies can be cured. Currently, there are no ongoing clinical trials in the UK investigating this condition, but all infants with ALL are now being treated on a UK NCRI Leukaemia sub-group national guideline which is designed to cause less side-effects and be more individually tailored to this vulnerable patient population.

At the same time, new laboratory tests are being performed at diagnosis and throughout follow-up of these patients, in order to better understand the disease and monitor individual responses to treatments. Similarly, scientists are also performing tests on samples from these infants to investigate which genes are behaving abnormally in the leukaemia cells, and whether these faulty genes can be targeted during treatment. 

SAIL aims to bring together large amounts of data about infants effected by this cancer from sources such as novel laboratory tests, data held by the NHS, research data and information gathered directly from parents. By combining these data sources, we hope to develop a large research resource to facilitate ongoing and future research into ALL.

Parent representatives have been part of this project from the outset, and we hope to build a parent network to help develop the SAIL Database as well as determine research priorities throughout the study lifetime.