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Brain tumours kill more children and adults under the age of 40 than any other cancer

Your Cancer Data, Your Say on Cancer Registration

by Greg Judge

Brain Tumour Research is working with other leading cancer charities including Macmillan Cancer Support and Cancer Research UK (CRUK) to carry out a review into the use and collection of cancer patient data. We are looking into how patients are informed about the use of their healthcare data in the cancer registry and how they can choose whether their information is included. We are hoping you will contribute to this review and you can do so now via this online survey. This survey is only open for a limited time so please do take a few minutes to add your comments. All contributions are anonymous.

Macmillan and CRUK are also hosting a series of national events to allow patients to share their opinions on cancer patient data.

This cancer charity review initiative has been developed in response to the Government’s own review of data security within NHS organisations and how they handle patient-confidential data. As part of their wide-ranging review, a Government panel will be considering how patients can opt-out of contributing their data to healthcare databases such as the cancer registry. The panel is being led by Dame Fiona Caldicott who is the Government’s National Data Guardian for health and social care.

As a national charity committed to funding continuous and sustainable research into brain tumours, we have seen how patient data has become an important tool in supporting the next-generation of scientists working to find a cure. The availability of large patient data collections is vital for researchers, allowing them to identify potential new therapies and plan future clinical trials.

Research into brain tumours has been underfunded for decades. Some 16,000 people are diagnosed with a brain tumour each year and diagnoses of and deaths resulting from this devastating disease on the rise. Individual treatment plans can offer researchers valuable insights including tumour type and responsiveness to treatments.

The Government review is due to be published in the autumn and the charity cancer registration review will be completed during this summer, in time for consideration by Dame Fiona Caldicott and her panel. Engaging with both patients and healthcare professionals is central to this charity review, as we want to ensure a healthy balance between patient choice and high quality data.

Thank you in advance for your contributions; you will be proving a powerful resource for future research into brain tumours.