Clinical trials & medical research

Young people's messages to other young people

Overall young people we talked to were pleased to have taken part in a trial. They felt they had had a good experience and most felt they had benefited from taking part, in a range of ways – for example learning more about their condition, feeling they’d helped others and sometimes improving their own health. Many said they would consider taking part in another similar trial if the opportunity was offered. (See also ‘Views on future trials’.) 

Taking part in a clinical trial is an important decision. Based on their experience, young people had messages for other young people who may be thinking of taking part, such as getting plenty of information and asking questions, getting other people’s opinions, being clear about any side effects, knowing what is involved and what is expected of you, and being open to the possibility of taking part. 

Sophie,aged 22, has cystic fibrosis. She says it is a big commitment to take part in a trial and there are lots of things to consider. When a trial involves allocation (randomisation) to one of the two or more treatment groups it can be a difficult decision to make.

In most clinical trials you will be allocated (randomised) to one of two or more treatment comparison groups. It is important that you understand what this means if you decide to take part. (See also ‘Why do we have clinical trials in children and young people’ and Understanding allocation (randomisation) to a treatment comparison group.) 

Robert, aged 22, has cystic fibrosis. He has taken part in several trials. Recently he took part in a Phase 1 Gene Therapy trial and is hoping he can go on to the next stage. (See ‘Why do we have clinical trials in children and young people and ‘Different types of trials’.) He says that sometimes you have to think about the bigger picture and that taking part in a trial is going to help others with your condition in the future. 

Until well-designed trials have been carried out, we simply do not have enough evidence to know the effects of treatments – wanted and unwanted. Without trials, there is a risk that people will be given treatments which do not work and which may be harmful. 

Sophie, aged 23,  talks about how she has benefited from the contribution of others in the past who have taken part in clinical trials to help improve treatment for cystic fibrosis. Like Robert, she says that taking part may not benefit you immediately but it may help you and others in the future and this is something young people need to consider when making a decision to take part in a trial.

Mohini, aged 12, decided not to take part in a trial involving intensive treatment for cancer. (See ‘Deciding not to take part although eligible to take part in a clinical trial’.) Taking the decision to take part in a clinical trial requires lots of thought about what it involves, how it may benefit you, and how it may benefit other young people in the future. 

Children and young people may need different treatments from those appropriate for adults because they are at a different stage of development. Clinical trials in children are therefore essential to ensure they receive appropriate, safe and effective treatments and care. There are guidelines to protect children who take part in clinical trials of medicines in the UK and throughout the European Union (EU). (See ‘Why do we have clinical trials in children and young people.)

Some of the young people we talked to said that taking part in research helped them to better understand their health condition, and at the same time they were contributing to knowledge about the condition and its treatment. 

Georgia, aged 10, says it is good to take part in research because she can tell the health professionals how arthritis affects her and then they can help other children with arthritis.

When you are invited to take part in a trial, it is important to receive adequate information. This may be in the form of a leaflet or booklet and the doctors or nurses may talk to you to explain the trial and answer any questions you may have. (See also ‘Being invited to take part in a clinical trial: information and questions.) Young people we talked to said it was important to get plenty of information and even ask the opinion and advice of family and friends. Alexander says, if there are long and complicated terms, it is better to ask than searching on the internet. 

Several young people said it was important to ensure that side effects were explained and that you could drop out or stop the trial if you wanted to. 

Taking part in a trial may involve extra hospital appointments, taking extra medication, having extra tests, keeping a diary or completing questionnaires. It is important to know what is involved in a trial and what is expected of you. (See also What is involved in a trial: appointments and monitoring’ and ‘What is involved in a trial: time commitment, costs and payment.’) 

Joanna took part in a randomised placebo controlled drug trial. She had to take extra medication and had to be quite organised otherwise she would forget to take it. 

Several young people we interviewed wanted to say how helpful and supportive the doctors, nurses and research teams were during the trial. They wanted to say that you shouldn’t be worried to take part because they are always there to answer any questions or if you have any concerns.

Last reviewed March 2017.
Last updated July 2014.
 

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