Call for patients in Gateshead to take part in life-changing research

Posted on Mon, 20/05/2019

 

When Emily Knox was diagnosed with ulcerative colitis, she found her lifestyle suddenly changed dramatically. But thanks to treatment, her condition is now under control.

Keen to help medics to one day find a cure, the 29-year-old is one of a growing number of patients taking part in ground-breaking research at Gateshead Health NHS Foundation Trust.

She shares her story on International Clinical Trials Day in the hope that more people will get involved with shaping the future of the NHS. 

Inflammatory bowel disease (IBD) affects about 1 in 20 people in the UK – particularly young people.

It can make sufferers quite weak, typically giving them abdominal pain, diarrhoea, nausea and lethargy. The symptoms can be extreme enough to affect all aspects of day-to-day living.

Now, PREdiCCT, the biggest study of its kind, is using the latest digital technology to better understand the factors that trigger or increase the risk of a flare – from diet to sleep, stress levels and work patterns.

Dr Dina Mansour, consultant gastroenterologist, Gateshead Health NHS Foundation Trust, said: “In recent years, we’ve got better at understanding the genetic risk factors and some of the disturbances in the immune system that lead to IBD.

“However, we are still a long way from knowing just what triggers a flare and or predicting what course the illness will follow in any given individual.

“The aim of the PREdiCCt study is to help us understand how factors in the environment, including diet and the bugs that live in the gut, increase or reduce the risk of a flare in Crohn’s and colitis.

“It will yield a lot of new information to help sufferers right away; but the information will also help to kick start many important future studies that will bring us ever closer to a cure for Crohn’s disease and ulcerative colitis.”

The study is coordinated by the University of Edinburgh and NHS Lothian and has contributions from gastroenterologists across the UK. It is looking to recruit 3,100 people with Crohn’s or colitis which is currently well controlled. 

Participation involves one face-to-face consultation before researchers use digital technologies to follow the disease course of individuals over two years whilst collecting information on the food they eat, their lifestyle, stress levels, gut bacteria, as well as DNA.

It is hoped that it may then be possible to find a link between these factors and the severity of each participant’s symptom flares.

Emily, a games designer and keen motorcyclist, from Haydon Bridge, Northumberland, was diagnosed with ulcerative colitis a year ago and has recently joined the study

She said: “When I was first diagnosed, I knew very little about Crohn’s and colitis. At its worst, I was having up to 15 bowel movements a day, which meant I was worried about ever going too far away from a toilet and I would get very bloated.

“It meant that I was no longer confident in taking part in some activities I enjoyed, such as  road trips on my motorbike.

“But now, thanks to medication, the symptoms are now well controlled.

 “I think people can still be squeamish about talking about problems involving bowels and I probably was too when I was first diagnosed. But they can have a big impact on people’s quality of life and I’m happy to talk about my condition now as I think it’s important to raise awareness.

“IBD affects different people in different ways and so I was really keen to get involved in research that may help to find out more about the causes and hopefully one day lead to a cure. It is a good feeling to think that by taking part in this study, I may be able to help other people with the condition in the future.”

This study is open to anyone over the age of six years who has a confirmed diagnosis of Crohn’s disease or ulcerative colitis which is currently well controlled.  ​

 Every year International Clinical Trials day shines a spotlight on health research and encourages people to take part.

To find out more about research in Gateshead please contact our research nurses on 0191 445 8414 or 0191 445 6283 or visit: QE Gateshead Research

 

 

 

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