Experts at Newcastle University and Public Health England have received more than £145,000 from Bowel Cancer UK and Beating Bowel Cancer.

Lynch syndrome, a genetic condition caused by changes in a set of genes called the mismatch repair genes, increases the lifetime risk of bowel cancer to up to 80%.

A person with Lynch syndrome is more likely to be diagnosed with the disease under the age of 50 and has an increased risk of other types of cancer, such as womb cancer.

National database

Research has shown there could be over 200,000 people in the UK with this genetic condition, yet fewer than 10,000 have been identified. Regular surveillance has been shown to save lives, but care is not effectively coordinated. 

Working with Public Health England and Health Data Insight CiC, Professor Sir John Burn, Dr Jem Rashbass and their teams will create a national registry of people with Lynch syndrome.

Using anonymised data, it will enable the teams to understand more about how and when people are tested for the genetic condition, if and when they develop bowel cancer, and record their surveillance, treatment and survival.

This award is part of Bowel Cancer UK and Beating Bowel Cancer’s investment of almost £450,000 to support research with the greatest benefits for those at risk and affected by the disease.

Professor Sir John Burn, from the Institute of Genetic Medicine, Newcastle University, said: “We are delighted to receive this generous research award to allow us to work with Public Health England.

“We will use a secure system to link national DNA test results to the Cancer Registry to help decide which spelling changes increase bowel cancer risk and by how much.”

Second biggest cancer killer

The research supports the Bowel Cancer UKs vision that by 2050 no one will die from the disease. Bowel cancer is the second biggest cancer killer in the UK, however, it shouldn’t be because it is treatable and curable especially if diagnosed early.

Dr Jem Rashbass, National Director for Disease Registration and Cancer Analysis at Public Health England, said: “This generous award from Bowel Cancer UK will allow us to collect anonymous data on individuals at risk of bowel cancer and link those who go on to develop cancer with Public Health England National Cancer Registration Service.

“The scale of this work is unmatched anywhere in the world and will provide new insights into the significance of the genetic changes that cause this common cancer.”

Deborah Alsina MBE, Chief Executive of Bowel Cancer UK, added: “We are delighted to invest in Professor Sir John Burn and Dr Jem Rashbass’ research.

“Their important work will support our commitment to invest in high quality, innovative and creative solutions to help lead a step change in the number of people surviving bowel cancer. 

"We’ve been at the forefront of campaigning for improvements for earlier diagnosis.  Whilst there have been  important steps forward,  there are still many unanswered research questions, which if addressed could help accelerate our progress further and ultimately save more lives.

“Through strategic investment in targeted research, we aim to drive positive change for patients and help to deliver improvements in bowel cancer survival in our lifetime.”

Press release adapted with thanks to Bowel Cancer UK