Here we take on some of the common myths surrounding clinical trials, and explain why they are vital for driving dementia research forward.
Alzheimer’s Society supports cutting edge research across the UK to develop new and improved treatments for dementia and ultimately find a cure.
Research will beat dementia and clinical trials are vital to making this a reality. Without clinical trials, we can’t be sure how effective or safe a drug might be.
If a new treatment makes it through all the stages of clinical trials, we can be confident it is safe and effective enough to be made available to the public.
The term ‘clinical trial’ might strike fear into the hearts of many. But in reality, are they really so terrifying?
Myth one: ‘You will have to take a drug that no one knows anything about.’
When we talk about clinical trials, people often jump to the idea of brand new, mystery drugs. Sometimes drugs are new but not untested.
Before clinical trials take place, they will have already been through rigorous testing in laboratory conditions before they are approved for testing in people. This is called the ‘preclinical stage’.
Very often, however, drugs tested in clinical trials have already been used to treat other conditions. This is known as ‘drug repurposing’. We will already know a lot about how safe the drug is and the effects it might have.
Of course, there are risks - but in the very carefully-monitored clinical trial setting, risks aren’t as huge as people may anticipate.
Myth two: ‘There is no point in taking part in a clinical trial if you are given a placebo.’
Clinical trials often need two groups of volunteers:
- The ‘active’ group: this group will test the active drug or intervention (e.g. taking part in an exercise programme)
- The ‘control’ group: this group will take a dummy drug, known as a ‘placebo’, or do not take part in an intervention
This allows researchers to compare the two groups and understand the true benefit of the drug or intervention.
The control group is vital and equally as important to the study as the active group.
Without a control group, we have nothing to compare the ‘active’ group to, so we cannot fully understand the impact of the drug. This means that without being confident that the drug is really working it is more difficult to get further funding to allow the continuation of the research.
In some drug trials, if successful, the control or placebo group can be offered the active treatment at the end of the trial.
Myth three: ‘Once you sign on the dotted line, you have to take part in a clinical trial.’
When you agree to take part in a research study or clinical trial, you give consent to confirm you are happy to take part.
It’s important to remember consenting to take part in a clinical trial is not legally binding.
Volunteers have the right to leave the trial at any point and do not have to give a reason why they are doing so.
Myth four: ‘Researchers will treat you like a guinea pig in a clinical trial.’
This is simply not true.
Research studies are strictly regulated to ensure that volunteers are safe and cared for.
In the vast majority of cases, volunteers find they received excellent care and really enjoy the experience.
Myth five: ‘You need to live near a research centre to take part in a clinical trial.’
Although there are benefits to being close to a research centre, living further afield does not exclude you from taking part in research.
Some volunteers are often willing to travel to research centres. However, there are many research studies that you can get involved in from the comfort of your own home. This might involve completing a questionnaire or being interviewed by a researcher over the phone.
How can I take part in research?
Explore dozens of research projects and clinical trials for dementia taking place in the UK, many of which are still looking for volunteers. Alternatively, sign up to ‘Join Dementia Research’, an online service from the National Institute of Health that matches people interested in taking part in research studies around the UK.