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Combining data for better monitoring

Fast facts

Official title: Establishment of a national system to monitor the risks of adverse health outcomes among the entire population of survivors of childhood, teenage and young adult brain tumour in Britain
Lead researcher: Professor Michael Hawkins
Where: University of Birmingham
When: October 2019 - September 2021
Cost: £298,314 over a period of two years
Research type: Quality of Life, Clinical, Primary brain tumours
Grant round: Quality of Life

What is it?

Currently there are two separately established national registries that help track and monitor the health outcomes of brain tumour survivors. These two registries are The British Childhood Cancer Survivor Study and The Teenage and Young Adult Cancer Survivor Study and they each account for 24% and 9% of brain tumour survivors in the UK, respectively.

This research project, led by Professor Hawkins, aims to establish one system that would allow us to monitor the health outcomes of brain tumour survivors under the age of 40. This system would help us track the risks associated with surviving a brain tumour and then help us to identify groups of survivors that have increased risk of poor health outcomes.

The team will accomplish this by electronically linking the medical data from already existing cancer registries and databases. Linking the medical data will allow the researchers to track various outcomes such as tumour recurrence, health issues resulting in hospitalisation, all GP prescriptions, and use of mental health services.

Tracking the health outcomes will allow researchers to:

  • evaluate the risks versus benefits of different treatments to inform future treatment plans
  • provide feedback to healthcare professionals and prepare educational materials for them
  • create clinical guidelines to help healthcare professionals follow-up with survivors
  • prepare survivorships care plans
  • provide targeted support, including counselling, to survivors.

Why is it important?

Currently, there’s no national system to track the health outcomes of people diagnosed with a brain tumour in the UK. Professor Hawkins’ research project will help address this gap by establishing a single system, containing the health outcomes of brain tumour survivors under the age of 40.

This system will help researchers measure the long-term risks associated with surviving a brain tumour and potentially help prevent further illness and provide targeted support.

Who will it help?

This project will help everyone diagnosed with a brain tumour under the age of 40 in the UK. It will also help track the long-term risks of surviving a brain tumour and inform healthcare professionals on the extent and type of support required by people affected. Ultimately this will help improve the quality of life for people who have survived a brain tumour.

Milestones

Achieved

We’re looking forward to seeing the achievements of this group when the project starts.

Upcoming

  • The research team will set-up the study and start by electronically linking databases that contain patient records of hospitalisations, future primary cancers, and deaths.
  • They’ll then initiate electronic linkage with records containing GP prescription and access of mental health services.
  • Once the records are finished being linked, they’ll conduct the necessary analysis to determine the long-term risks for those children surviving a brain tumour, followed by teenagers and young adults surviving a brain tumour.

If you have any questions about this, or any of our other research projects, please contact us on research@thebraintumourcharity.org

Research is just one other way your regular gift can make a difference

Research is the only way we will discover kinder, more effective treatments and, ultimately, stamp out brain tumours – for good! However, brain tumours are complex and research in to them takes a great deal of time and money.

Across the UK, over 100,000 families are facing the overwhelming diagnosis of a brain tumour and it is only through the generosity of people like you can we continue to help them.

But, by setting up a regular gift – as little as £2 per month - you can ensure that families no longer face this destructive disease.

Donate today

Mike Hawkins is Professor of Epidemiology and Director of the Centre for Childhood Cancer Survivors Studies.