Fund research for childhood cancers with the worst survival rates

12 kids in the UK are diagnosed with cancer daily. 1 in 5 will die within 5 years, often of the deadliest types like DIPG (brainstem cancer) - fatal on diagnosis & other cancers on relapse. Yet there has been little, or no, funding for research into these cancers and little, or no, progress.

The Government must state how much has been given for childhood cancers and DIPG specifically.

The Government, through the NIHR, must ringfence funds for childhood cancer research. The figures must be transparent as must the Government's answers about the lack of progress in curing these diseases.

The Government should fund awareness campaigns such as Childhood Cancer Awareness Month & Sarcoma Awareness week. Awareness + research = cure Our children keep suffering and dying.

Research is a crucial part of the fight against cancer. The Department of Health and Social Care (DHSC) funds health research through the National Institute for Health Research (NIHR) to improve the health and wealth of the nation. Cancer research expenditure has risen from £101 million in 2010/11 to £136 million in 2017/18. This constitutes the largest investment in a disease area.

In May 2018 the Government announced £40 million over five years for brain tumour research as part of the Tessa Jowell Brain Cancer Mission. This includes funding for childhood brain tumour research. This announcement will remain a priority within any Spending Review.

Funding will be invested through the NIHR, to support a wide range of research from early translation (experimental medicine), through clinical, and on to applied health and care research. In essence, this will support the translation of laboratory discoveries into treatments and better care for patients, including childhood cancers.

As with other Government funders of health research, the NIHR does not generally allocate funding for specific disease areas. The level of research spend in a particular area, such as DIPG or neuroblastoma, is driven by factors including scientific potential and the number and scale of successful funding applications.

We are relying on researchers to submit high-quality research proposals in this very difficult area. To encourage such applications, we have released a NIHR Highlight Notice on brain tumour research asking research teams to submit collaborative applications building on recent initiatives and investments. The highlight notice appears to have led to an increase in applications and these are now being considered.

We are working closely with research funding partners such as Cancer Research UK, the Medical Research Council, and brain tumour charities, who fund research into new scientific discoveries. We stand ready to translate these new discoveries as quickly as possible into new treatments and diagnostics for patients via the NIHR.

We are also working closely with our research funding partners, and other stakeholders, via the Tessa Jowell Brain Cancer Mission, which will meet several of Dame Tessa’s campaign requests to improve research and care for adults and children with brain cancer.

The NIHR is funding and supporting a range of research for children with neuroblastoma. For example: the NIHR Great Ormond Street Biomedical Research Centre (BRC) is researching the use of imaging to assess the efficacy of induction chemotherapy for high-risk neuroblastoma; the NIHR Newcastle Biomedical Research Centre is studying the genetic profiles of high risk neuroblastomas to provide predictive and prognostic biomarkers for current and future targeted therapies; and the NIHR Royal Marsden Biomedical Research Centre is developing preclinical models of neuroblastoma and childhood soft tissue sarcoma cells for the development of target-driven drug treatment.

The NIHR Clinical Research Network has over 800 cancer trials and studies recruiting or in set-up. Through the Network, the proportion of patients entering cancer clinical trials and studies is more than double that in any other country for which data exists, including the United States.

In September 2016 the Secretary of State for Health announced an £816 million investment in 20 NIHR Biomedical Research Centres for 5 years from April 2017. This funding includes the NIHR Royal Marsden/Institute of Cancer Research BRC which will focus exclusively on cancer research and will receive £43 million over five years from April 2017. Five other BRCs will have dedicated cancer research themes. The funding amount for cancer research over 5 years across all BRCs is an estimated £131 million.

The NIHR is committed to the involvement, engagement and participation of children and young people in research, supporting researchers and funders, as well as empowering children and young people to lead their own journey with research.

The NIHR have many children and young people (CYP) initiatives ongoing, such as: Raising awareness e.g. some Local Clinical Research Networks have set up Children and Young People's Forums to engage them in raising awareness of health research among their peers; Contributing to feedback. In 2018/19 over 900 children and young people (11% of respondents) gave feedback about their experience of participating in clinical research through the NIHR Research Participant Experience Survey.

Department of Health and Social Care