National UK charity Bowel Research UK has launched a new, in-depth public survey on faecal incontinence, a much neglected and little discussed condition.
Bowel Research UK is inviting people with faecal incontinence as well as relatives, friends and carers of people living with the condition to complete a survey which can be found on the AMELIE project website (https://amelie-project.eu/survey/). It takes around 10 to 15 minutes to complete and will remain live until the end of January 2022.
Bowel Research UK is seeking to learn what the public understands about existing treatments for faecal incontinence as well hearing about how it affects people’s lives, which in many instances can be severely impaired.
Bowel Research UK is the patient involvement partner in a ground-breaking €9.5m European research project called AMELIE (www.amelie-project.eu – Anchored Muscle cELls for IncontinencE), which in November 2020 was awarded €9.5m by the European Union to fund a revolutionary cell therapy as a potential cure for faecal incontinence, which affects an estimated 67 million people in Europe.
The AMELIE project looks to take the patient’s own muscle cells, load them onto specially designed microcarriers then implant them into damaged anal muscle to promote regeneration and restore normal sphincter function.
The funding has been distributed to a consortium of 13 organisations across nine European countries and is led and co-ordinated by Richard Day, Professor of Regenerative Medicine Technology at UCL in London. Other AMELIE partners in the UK include Queen Mary University of London, and the NHS Blood and Transplant Service.
Dr Lesley Booth, Director of Research and Patient & Public Involvement at Bowel Research UK, comments:
“This survey is the first time that we have sought to understand how much patients and their families know about what treatments are already available for faecal incontinence, and to find out much more about how this little-discussed condition is affecting their lives.
“We are also hoping that some of the people who complete our survey will go on to take part in clinical trials for the new AMELIE treatment. We would like to thank everyone who takes part in our survey for kindly sparing their time.”