Neuroblastoma is a complex disease, and one which is not yet fully understood. One thing that is known, is that in spite of intensive treatment, high-risk neuroblastoma has an alarmingly high rate of relapse. In recent years, clinical research has looked to develop treatments to reduce the risk of the cancer returning once it has been destroyed by frontline therapy.  

Solving Kids’ Cancer UK provides support to families affected by neuroblastoma in a multitude of ways, including emotional and financial support, and help to navigate the complex landscape of treatment and decision-making. For some families who choose to access clinical trials of maintenance therapies, this support extends to fundraising campaigns. We equally support the needs of those families who choose not to take this pathway for their child- such decisions are far from simple and receive impartial guidance and respect from our dedicated Family Support team. 

Currently there are two pathways that families can follow at the end of standard treatment in the UK- the Beat Childhood Cancer clinical trial of DFMO, or the bivalent vaccine clinical trial at Memorial Sloan Kettering Cancer Centre. Accessing either of these trials requires travel to the US and therefore raising of funds, often through a public campaign. Whilst this understandably causes frustration for families in the UK, and adds to the burden of their child’s diagnosis, the process of clinical research and complexities behind its funding, makes it extremely challenging to make such trials widely available to patients across the globe.  

In the feature below, Research Director and Chair of Trustees Nick Bird explains the complex landscape of relapse prevention and its accessibility for families in the UK.

Relapse Prevention Therapies in High-Risk Neuroblastoma