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 – January 2023
Cost: £298,314
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

The team have electronically linked databases that contain follow up information on children and young adults who have survived brain tumours. This includes any subsequent hospitalisations or primary cancers.
They have started to link their records with GP prescriptions and mental health services as well as format and clean up the central database so they can start data analysis imminently.

Upcoming

Begin statistical analysis to gain a better understanding of the association of being a brain tumour survivor and developing subsequent cancers
Finish off linking the databases with GP prescription and mental health records
Use the information from the databases to investigate the substantially increased risk of mental health problems among brain tumour survivors. Hawkins and his team aim to examine patterns in drug prescriptions of brain tumour survivors compared to the general population to identify better ways to support individuals who survive brain tumours and improve their quality of life
Start planning how to best showcase and communicate the information they discover to ensure as many people as possible benefit from their research
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.

If you have any questions about this, or any of our other research projects, please contact us on [email protected]

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.

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