What type of study are you taking part in?
“The UK Autoimmune Hepatitis Cohort (AIH-UK) observational study. It’s where the immune system develops a fault & starts to attack parts of the body, in my case the liver. This is a rare disease which only affects around 10,000 people in the UK.”
How did you find out about the study?
“Dr Maggs asked if I would like to take part when I was in clinic, then Ruth Penn the Research Nurse met me at Stoke Mandeville when I had my biopsy.”
Why did you decide to take part?
“Being a fairly rare disease I felt strongly I should participate especially & there was a strong possibility it could be genetic. Therefore my children & grandchildren could be affected.”
What do you have to do?
“I have regular blood tests to monitor my treatment & an extra one is sometimes donated to the study. When I had my liver biopsy & extra bit of sample was also taken for the study. I’m followed up for 2 years & have to fill in questionnaires about how I’m feeling on some visits.”
What would you say are the benefits to you?
“The benefits to me are that I’m being closely monitored. Any questions I have are fully explained by Research Nurse Ruth, which is very reassuring.”
What would you say to anyone thinking about taking part in research?
“Do not hesitate. You feel you are helping identify new tests & treatments for the benefit of others.”