Do people with MS do better on clinical trials, even if they aren’t selected to take a new treatment?
Background
Dr Rachael Kee is a Consultant Neurologist specialising in MS working in Belfast, Northern Ireland. She spent her PhD studying how the immune system can affect the brain in MS. Dr Ger Mullan is a doctor with an interest in MS, also based in Belfast. He spent his Master’s degree researching the effects of the immune system on certain brain cells in MS. They want to investigate how clinical trials can affect people with MS and are running a questionnaire through the UK MS Register.
Clinical trials are large experiments that try to work out if a new treatment for a disease works, and if it is safe for people to take. In clinical trials, people taking the new treatment are compared to people in a control group, who are either taking a placebo (fake) tablet, or are being given the best available treatments.
We know from research in other diseases that people who take part in clinical trials can do better overall compared to people with the same disease who have not taken part in a clinical trial, even if they haven’t taken the new medicine being studied in the trial. We’re not exactly sure why this is, but it seems that people can benefit from other aspects of taking part in clinical trials, like regular contact with a healthcare team, or the excitement of taking part in something new which might help. There have been many MS clinical trials over the years but none have looked at whether this extra benefit to clinical trials is also seen for people with MS.
Your Involvement
This is where participants of the UK MS Register come in. The research team from Belfast want to know if you have ever been involved in an MS clinical trial, and are just as interested in your answers if you have never taken part in a clinical trial. They want to know what trial you were involved in (if any) and how MS affects your day to day life.
The answers from this study will be put into three groups: people who have taken part in an MS clinical trial and got a new treatment; people who have taken part in an MS clinical trial and didn’t get a new treatment and; people who have never been in an MS clinical trial. The researchers will compare the information provided to help figure out whether people with MS can do better in clinical trials, even if they don’t receive a new treatment.
This questionnaire is available now on the UK MS Register.
Results
If the questionnaire results show that people with MS can do better in clinical trials compared to people who haven’t taken part, even if they aren’t given a new treatment, then the team will do more research into why this is the case.
The outcome of this research will be shared with people with MS and their doctors and nurses so that everyone is well informed, and people with MS can be encouraged to take part in clinical trials. To take part please log in to your account here or to sign up to the Register and start donating your data to MS research please click here.
