Exploring the role of genetics on children’s quality of life

Fast facts

• Title: The OUTLIVE project: towards a natiOnal qUaliTy of survival after brain tumours hIVE
• Lead researchers: Dr Debbie Hicks and Dr Akanksha Senapati
• Where: Newcastle University
• When: Sep 2025 – Feb 2027
• Cost: We will fund £100,436 over 18 months
• Research type: CNS tumours, Paediatric, Quality of Life, Clinical
• Award type: Quality of Life

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Many children living with the effects of a brain tumour face long-term cognitive challenges that affect memory, learning, and daily life. These difficulties can impact their ability to live independently, pursue education, build careers, and maintain relationships. However, researchers still don’t fully understand why some children experience more severe cognitive effects compared to others.

A combination of factors, such as treatment type, environment, and genetics, likely play a role. One area of interest is single nucleotide polymorphisms (SNPs). These are small differences within a gene, that every person has. Certain SNPs may be linked to a higher risk of cognitive difficulties in children following a brain tumour, but more research is needed to understand these connections

What is it?

This research, led by Dr Debbie Hicks and Dr Akanksha Senapati, is taking place across three major UK children’s hospitals – Newcastle, Manchester, and Liverpool. The team will collect blood samples, medical records, and perform cognitive tests on children living with brain tumours to explore how genetics (SNPs) may influence long-term cognitive health. The study also aims to lay the groundwork for a national survivorship research network to improve ongoing care and support.

By identifying genetic risk factors, this research could help doctors predict which children are most at risk of long-term effects and develop targeted interventions to protect and improve their cognitive health, leading to better long-term quality of life.

Why it’s important

Some children have a harder time with memory and learning after a brain tumour than others, and we don’t yet know why. This research could help doctors spot which children are most at risk, so they can get the right help early on, helping children with brain tumours live healthier, more independent lives.