Over 600,000 people took part in NHS research in 2014 and they did so for a number of reasons. For some it was a wish to help further medical understanding, both for conditions that directly affected them, and also to help society as a whole in treating conditions that did not. Others took part because it was a great way to potentially receive revolutionary new treatments that might be effective in managing their condition. This was particularly the reason for some who had found that everything generally available to the public via doctors or pharmacies hadn’t worked.
When a drug typically takes between 10-15 years to be approved by the European Medicines Agency (Europe wide license) or the Medicines and Healthcare products Regulatory Agency (UK license), taking part in a clinical trial means that you might have access to a potentially groundbreaking new treatment several years before it is widely available, can seem like the perfect solution. However, there are a few things you should ask yourself before signing up.
Firstly, do you have time to take part? Clinical trials will generally involve not just the taking of the treatment itself, but in-depth monitoring. You will usually need to undergo more tests than you would otherwise have to in order for the researchers to ascertain whether the drug is working in the way they expected and treating the condition effectively. For some people extra monitoring is reassuring, particularly in cancer drug trials, but it does take up a fair amount of time. Especially if you have to travel to have the tests.
Next, can you afford to take part? Some trials do pay their volunteers for taking part it’s true. Especially during phase 1 trials in which healthy individuals are given a new drug that has previously not been tested on humans before. However, the majority of phase 2 and 3 trials, in which the drugs are given to volunteers who suffer from the condition which the drug is designed to treat, can not afford to pay their volunteers much more than travel expenses. So you need to think about whether you can afford to potentially take time off work in order to take part.
Also to ask is whether you know enough about the trial. For example, is it being conducted by a reputable company? Are safety and ethics being fully adhered to? A good way to find out is by reading the protocol (a document that researchers have to produce which lays out full details of what is planned and involved in the trial). It could also be helpful to download the UK Clinical Research Collaboration’s “Understanding Clinical Trials” booklet.
And a last few questions to ask before signing up; what are the potential side effects of the treatment? Will my family be comfortable with me taking part? How do I find out the trial results? Will I still be able to continuing taking the treatment after the trial if it proves effective?
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