Want to join a drugs trial? Here’s how…
It’s easier than you might think to join a drug trial or research study for dementia, and it could be really beneficial, too.
In a nutshell
The only way to beat dementia is by doing research. Lots of it. Fortunately, the UK Government has recognised this fact and is investing more and more money into clinical trials to find out more about the disease and better ways to treat it. But money isn’t enough. For the research to be thorough and effective, volunteers are needed to take part in it – the more the better.
Four facts worth knowing
1. Every 3.2 minutes someone develops dementia in the UK.
2. Around 850,000 people in the UK have dementia.
3. Yet fewer than 8,000 have volunteered for research.
4. For research to progress, more people are needed to take part in more studies.
What actually happens?
There are hundreds of research projects taking place all the time. The easiest way to get involved is to join an organisation called Join Dementia Research (see below). You’ll be asked to fill in a simple form online to register your interest and then you’ll be placed on a register of volunteers which is used by researchers nationwide when they want to recruit people for studies.
You don’t have to do anything else. If your condition or experience is a good ‘match’ for a particular study, a researcher will contact you and tell you more about it. You don’t have to say ‘yes’ straight away and if you want to drop out at any time, that’s fine too.
Good to know
• You can sign up on behalf of someone else, providing they have given their consent or you have a Power of Attorney.
• Although research is mainly aimed at people with dementia and their carers, healthy volunteers over 18 are also needed.
• The vast majority of people who take part in dementia research – whoever they are – seem to find it a rewarding experience.
Could this be you?
If you are living with dementia you might be asked to try out a new drug which isn’t available yet on prescription, and there’s every chance that drug might help you.
• Even if it doesn’t make much difference to you, many people still feel better for having taken part and for ‘doing their bit’ in the search for a cure. ‘I’ve got nothing to lose’ is the attitude most participants take.
• It’s not all about drugs. You could find out more about your condition or ways to improve your symptoms. For example, some research focuses on nutrition, lifestyle or genetics.
If you are caring for someone with dementia, or dementia has effected your family, your contribution could be valuable too. Some studies focus on genetics or on finding more ways to help carers and loved ones to cope.
How to get involved
1. Join the register by clicking here.
This is definitely the easiest way to do it.
2. Join a trial directly
This is a bit more complicated but it might be useful if you are interested in being considered for a trial into a particular drug that you’ve heard about. Click here and look for trials in the UK that are recruiting now and follow the links.