Why is clinical research so important?
Should I participate in a clinical trial?
Should I enrol my child in a clinical trial?
What about fragile patients who cannot decide for themselves?
WHY IS CLINICAL RESEARCH SO IMPORTANT?
Opinions, even the most authoritative, and habits are unfortunately not enough for deciding if a certain treatment is going to benefit patients and if the benefits will outweigh adverse reactions.
Healthcare systems nowadays require sound scientific evidence on effectiveness and safety before allowing marketing of new treatments, medical devices, diagnostic or surgical procedures especially when, as happens in the EU, they cover the costs in total or partially for citizens.
Resources are limited and need to be shared among all the available treatments for different diseases and conditions. The best way to make sure large amounts of money are not wasted in useless or even harmful treatments while effective ones are neglected is to wait for the results of well-designed clinical trials. (Watch also the film by ECRAN)
Should I participate to a clinical trial?
There is no simple answer to this question, since the decision to enrol in a clinical trial is very personal and is yours only to take. You may be looking for a study because you have been diagnosed with a certain disease and would like to know all the available options or you might be healthy and willing to participate in clinical research to help others.
Whatever your reasons might be, you need to understand the potential risks and benefits of participating in a clinical trial before deciding.
Ask the research team to explain to you in detail what is going to happen during the clinical trial and anything else that might come to mind. Don’t be shy and ask as many questions you can think of (you can find below a list of possible questions for you to take inspiration).
Talk with your doctor and, if possible, with other patients already enrolled in the same clinical trial. Gather as much information as you can and make sure the trial will work for you logistically.
Should I enrol my child in a clinical trial?
If your child has been diagnosed with a health problem and is eligible for a clinical trial, either you or your partner will need to take the decision for him/her or involve your child in the decision. Clinical trials involving children are strictly regulated to ensure maximum protection and safety and to minimize risks.
Besides collecting all the information you can, ask your child doctor for a better understanding of the possible benefits and adverse reactions your child might experience.
You have the right to withdraw your child from a clinical trial at any moment without having to explain the reasons.
What about fragile patients who cannot decide for themselves?
As for children, when patients are not capable of understanding and cannot decide for themselves, their direct relatives or legal representatives are entitled to give permission or not for them to enroll in a clinical trial.
