Thinking about joining a clinical trial? What are your concerns?

Running clinical trials are how doctors and researchers improve your treatment and care, and how new forms of diagnosis for aspergillosis are advanced. It is particularly difficult to get volunteers when the number of people affected by a disease is small – and aspergillosis is one of those diseases. If we can’t get enough people in trials then the value of that work is weakened and there can be less chance that a new treatment will be made available, or a new way to diagnose those at risk from aspergillosis might be delayed.

That said, there are many perfectly good reasons why someone may not volunteer, and it is a very personal decision. If trials are not for you for any reason then you must not feel compelled to do so. We recently ran a poll on our Facebook group to try to identify some concerns that people may feel with volunteering. The most frequent were:

1. I live too far away.
   This is fair enough. Most trials are based in or close to large cities and will ask you to travel to the trial centre regularly. There is no point in joining a trial if that journey is arduous and you would be unlikely to be able to travel at any point.
2. Worried about side effects.
   Side effects happen when you are taking many medications and may well happen if you are taking a new treatment. However you will have a dedicated member of staff looking after you to remedy any that crop up, and if the worst happens and you cannot tolerate the side effect you can leave the trial with our thanks. You are always in control.
3. I am worried that I might be asked to stop taking my current medication and be given the placebo.
   Before trials are run in the UK and many other countries they all must be passed by an ethics committee. The rules of ethics are guided by a number of national and international bodies to ensure ethical conduct, patient safety, and scientific validity. Allowing one arm of a trial to leave patients untreated for an infectious disease is generally unethical and unlikely to be approved, particularly if effective treatments are available. In most cases a test drug will be offered with standard treatment and compared with a placebo also with standard treatment. Neither arm will be untreated. NB once a new drug has gone through this phase and been shown to be effective at controlling eg aspergillosis, then it may be offered on its own during the next trial if ethics agree.
4. I rarely hear about any trial that I might be able to volunteer for.
   Most people will hear about a trial when they are asked to join one by their doctor. Most doctors running a trial will check that you fall within the specific trial criteria before approaching you. This saves time but of course, it can only be successful if you see enough appropriate patients to ask, which is why specialist centres with lots of patients run so many trials. If you do not attend a specialist centre but would like to be assessed to participate in a trial you can ask your doctors or do your own research – click on the link below.

UK Clinical trials for aspergillosis

Thanks for considering taking part in a clinical trial.