Have you taken part in a clinical trial? Would you be willing to share your experiences with others?
LUPUS UK are planning to develop a range of new information resources sharing the experiences of people who have participated in clinical trials and we want to hear from you! Share your experiences via our questionnaire HERE and help us tell people what it’s like.
Clinical trials are a key part of developing new medicines for conditions like lupus. Trials are research studies which test if a treatment is safe and effective for a particular condition or group of people. What actually happens during a trial depends on what type of treatment they are testing and what stage of the testing process they are at, but it often includes comparing the new treatment with one already being used, to see if it is better. You can find out more about the different stages of clinical trials on the NHS website.
To be more certain that a treatment is effective, it’s important that it is tested with a wide range of people, so they can see if there are any differences in how people respond related to, for example, the type of illness they have or personal characteristics like age, gender, or race.
There are lots of reasons why people don’t take part in clinical trials, including living too far from where the research is happening, not meeting the study’s criteria for taking part, or communication about the research being confusing. Sometimes, people would like to take part but just don’t hear that the research is happening, or are too unsure what being in the trial would involve as it’s not something they’ve done before.
There are also lots of reasons why people do take part in clinical trials, such as for personal benefit, like getting access to a treatment that’s only available through the trial, or to help other people like them in the future who may then receive the treatment. You can see videos of people talking about the reasons they did, or did not, take part in trials on the HealthTalk website.
At LUPUS UK, we share on our website when there are research trials for lupus recruiting in the UK so that people who might be interested in taking part can hear about it. What we want to do now is to share what it’s like to take part in clinical trials. We hope that this will help people to understand what happens in trials, whether they are interested in taking part in one or not.
We are looking for people with lupus who have taken part in a clinical trial and are happy to share their experience with us so that we can develop some new informative resources together.
To share your experience please complete THIS short questionnaire.
If you have any difficulties with the questionnaire, or you prefer to tell us about your experience another way, please contact Michaela Smith on Michaela@lupusuk.org.uk or 01708 731251