Clinical trials & medical research

Views on future trials

We asked young people if they would consider taking part in another clinical trial if the opportunity was offered. The majority of young people we interviewed said they would take part in other trials similar to the one they had taken part in. Some young people said that if the trial involved a change to their treatment or if it was a drug trial then they would give this more thought. They would consider the risk and benefit to themselves and the wider benefits of the trial for other young people and medical research.

They said they would want good, clear information about the trial. Importantly, they would want to know of any possible side effects, and that any treatment or medication had been previously tested for safety. They said they would want to know what was involved in the trial and what was expected of them. (See also ‘What is involved in a trial: time commitment, costs and payment’; ‘What is involved in a trial: appointments and monitoring’; ‘Getting feedback and when the trial ends’.)

Lauren is taking part in a trial on improving the treatment for diabetes. The purpose of the trial is to see whether the background insulin used alongside a carbohydrate diet has any side effects among young teenage girls.

Hannah, aged 17, was diagnosed with diabetes at the age of 4. She recently took part in a randomised trial comparing different approaches to self-management of diabetes, including diet. Hannah is keen to help other young people with diabetes and would consider taking part in trials that involve a change to her treatment as long as all known side effects were explained and it was safe to take part.

Joe, aged 15, was recently diagnosed with diabetes and is keen to help advance knowledge and others’ understanding of the condition. Even though he doesn’t want to miss school or going out with friends he still thinks taking part in a trial and helping research is a good thing to do.

Jhon, aged 13, has osteogenesis imperfecta. Osteogenesis imperfecta is a genetic condition in which bones break easily. When Jhon was born his parents agreed to take part in a lung and asthma research study that involves completing annual questionnaires. His parents still complete the questionnaires that ask about Jhon’s health. More recently Jhon took part in the second stage of the research which involved a series of allergy tests. The tests were carried out at his school. He has not taken part in a clinical trial yet but he is keen to help advance medical knowledge and other young people. (See ‘Other types of medical research’.)

As well as thinking about safety, young people we talked to thought about the practical issues involved in taking part. Some young people said they would take part in trials similar to the one they had taken part in if their parents were happy and the trial didn’t take up too much time. Jenna, aged 13, was diagnosed with poly-articular idiopathic juvenile arthritis at the age of 11. She is taking part in a randomised placebo controlled drug trial and would be happy to take part in a similar trial in the future if it was convenient for her parents. (See ‘Why do we have clinical trials in children and young people’ for an explanation of the different types of trials.) 

Some young people we interviewed were unsure about taking part in future trials because of starting a new job and social commitments. Kay, aged 23, was diagnosed with cystic fibrosis at 2 months of age. She has taken part in two randomised placebo controlled drug trials. Even though Kay is unsure about future trials due to her work and social life she feels that young people should ‘grab’ the opportunity to take part in a trial ‘with both hands’ if it is on offer.

Robert, aged 22, was diagnosed with cystic fibrosis soon after birth. He has always taken part in clinical trials ranging from one day to one month and longer. Robert is keen to advance knowledge about cystic fibrosis to improve treatment and care for others in the future. However, now that he has finished university and started work he says he will have to think about what is involved and the time commitment before agreeing to take part in other trials.

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Sometimes a trial may require you to take extra medication, have extra tests at the hospital, and complete diaries at home. (See also ‘What is involved in a trial' appointments and monitoring’.) You may have to miss going out with friends or other social activities. Sometimes being in a trial may mean taking time from school and doing extra homework to catch up. Alexander aged 18 is taking part in a randomised placebo controlled drug trial for the treatment of arthritis, but is unsure about taking part in another drug trial if it was offered. 

Some young people said they were unsure about taking part in drug trials. 

Mohini, aged 12, was diagnosed with acute lymphoblastic leukaemia when she was 9. She decided not to take part in a trial that involved intensive chemotherapy. It was a difficult decision to make. Although Mohini is supportive of clinical trials and research, she says that if she was offered another trial that involved more medicines she may have to say ‘no’. (See ‘Deciding not to take part although eligible to take part in a clinical trial’.)

Chris, aged 17, took part in a study as a healthy control. The study compared the results of tests and activities completed by healthy children with those of children with attention deficit and hyperactivity disorder (ADHD). (See ‘Other types of medical research’.) The tests ranged from response times using computer packages/games to having body scans. He says that taking part in a study like this can be an enjoyable experience. Although he is prepared to take some risks he is less sure of taking part in drug trials. Chris is aware that although offering money may encourage young people to take part in a trial, they need to think carefully why money is being offered and question who is running the trial.

When a new treatment is developed, such as a new cancer drug, it will be tried first in a few people to get an idea of how safe it is. They may be healthy volunteers, who are given a compensation payment for taking part, or they may be people who are ill, perhaps people who have already tried all the usual treatments. 

However, some trials may offer a small payment or voucher at the end of a trial as a thank-you for taking part. (See ‘What is involved in a trial: time commitment, costs and payment.’)

Georgia, aged 10, is taking part in a research study on young people with arthritis. She says it is good that young people take part in research to help other young people in the future. If the trial involved changes to her treatment she would have to ask her parents’ permission and she would like plenty of information; but if the treatment involved having injections then that might put her off.

Last reviewed March 2017.


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