Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what data his Department holds on the number of children living with DIPG each year; and what resources has the Government allocated to research into the causes of and treatment of DIPG.

The Department is committed to furthering investment in research into the causes and treatment of brain tumours. Between 2018/19 and 2023/24, the Department’s research delivery arm, the National Institute for Health and Care Research (NIHR), invested £11.8 million, and United Kingdom Research and Innovation invested £46.8 million in this area.

In September 2024, the NIHR launched a package of support to deliver a step-change in brain cancer research through:

• establishing a national NIHR Brain Tumour Research Consortium to bring together researchers from different disciplines to drive scientific advancements in how to prevent, detect, manage and treat brain tumours;
• a dedicated funding call for research into care, support and rehabilitation for people living with brain tumours; and
• the Allied Health Professionals Brain Tumour Research Fellowship programme, a partnership with the Tessa Jowell Brain Cancer Mission.

The Department does not hold specific data on the number of children living with diffuse intrinsic pontine glioma (DIPG) each year. The National Disease Registration Service (NDRS) collects diagnosis, treatment and outcome data on cancer patients in England. The most recent published data on registrations of cancer including cancer incidence and mortality in the Accredited Official Statistics on Cancer Registrations covering 2023 is available at the following link:

https://digital.nhs.uk/data-and-information/publications/statistical/cancer-registration-statistics

DIPG is not currently one of the cancer groups routinely published against, however work will be undertaken by the NDRS to understand whether there are any improvements needed in registration to accurately identify DIPG moving forwards.