The impact of charity funded research: Spotlight on the MiNivAn study
Medical research is a powerful force for progress, and charity funding plays a crucial role in driving innovation and improving lives. In 2023, members of the Association of Medical Research Charities (AMRC) invested £1.7 billion in UK research. By strongly supporting research, charities help translate groundbreaking discoveries into treatments that improve patient outcomes. In addition, they often act as advocates for specific diseases, raising awareness and influencing public policy. In the UK, these charities are essential for pushing the boundaries of medical knowledge, providing hope to patients, and accelerating the development of life-changing therapies.
This is especially true when it comes to research into children’s cancers, where charity-funded research offers hope and drives progress for a brighter future. While involvement from government and the pharmaceutical industry plays a key role, many breakthroughs in pediatric oncology are made possible by the generosity of charity supporters. These contributions allow organisations like ours not only to improve the future for young patients but also to give families a sense of renewed hope.
Our research approach puts hope and innovation at its core, which is exactly why we fund and facilitate crucial projects like the MiNivAn trial, which aim to find effective treatments for children with poor outlooks and limited options.
The MiNivAn trial
Unfortunately, in around half of all cases of high-risk neuroblastoma, the cancer will not respond fully to standard therapies, or may come back after treatment has ended. The Phase I MiNivAn study aimed to tackle this challenge by testing a new combination of therapies to improve survival rates in children with high-risk neuroblastoma. The trial combined anti-GD2 antibody therapy, specialised radiotherapy known as mIBG therapy, and a new drug called Nivolumab. Anti-GD2 antibody and mIBG therapies are already standard options for neuroblastoma treatment. However, Nivolumab introduces a novel approach by targeting a molecule called PD-1, which helps cancer evade the immune system. In other cancer types, by blocking PD-1, Nivolumab enhances the immune system’s ability to attack the cancer and sustain this response over time. The aim for the MiNivAn study was to see if this could also be an effective mechanism in high-risk neuroblastoma, when combined with existing therapies.
If the combination therapy proves to be safe and effective, it could be investigated further in larger trials and eventually become a new standard of care for children with relapsed and refractory high-risk neuroblastoma, offering renewed hope to families. This project also underscores the importance of investing in innovative research and international collaboration.
Meet Arianna
Arianna was diagnosed with high-risk neuroblastoma in November 2021, at just 5 years old. After suffering with worsening back pain, Arianna’s family took multiple trips to their GP and eventually A&E where they were told Arianna had a tumour on her kidney. This was later diagnosed as stage 4 high-risk neuroblastoma that had spread to her bones and bone marrow. Following initial chemotherapy, Arianna’s cancer began to respond, but not enough to allow her to progress to the next stage of standard treatment. At this point, Arianna was accepted onto the MiNivAn trial.
As a result of being able to take part in this important trial, Arianna’s disease reduced even further which allowed her to progress on the standard treatment pathway as planned.
“Being able to access the MiNivAn trial, for us as a family, has really saved our lives, quite literally. Arianna had a significant response… we would do it all over again. We don’t know where we would be at this moment if it wasn’t for the trial, so the trial really means the world to us.”
Abigail, Arianna's Mum
Continuing progress
The importance of clinical research for children with cancer is clear, which is why we are one of the hundreds of medical research charities investing in innovative research in the UK. In addition, we are striving to improve the environment in which clinical trials for children with cancer are conducted, by campaigning nationally and collaborating across the sector to identify and address issues that are hindering progress. That’s why we were pleased to attend AMRC’s Parliamentary Reception, where we were able to share directly with MPs and peers, why charity-funded research is crucial and must be enabled to thrive.
Government support to improve this ecosystem is essential for accelerating the development of new, effective treatments. Their support helps ensure that children have access to the latest therapies and can significantly improve survival rates and outcomes in the fight against childhood cancers. Read more about our campaigning efforts via the link below.
