Clinical trials & medical research

Other types of medical research

Sometimes research is undertaken to get a better understanding about children and young people’s health or a health situation, rather than to test or compare treatments, drugs, or other types of care. The most common types of other medical research studies are known as observational studies. An observational study is one in which no intervention is made and the researcher simply observes what happens without influencing it. Cohort studies are a commonly used form of observational study used to study a condition or treatment through time. Cohort studies can be used to study incidence (how common a condition is) and causes and prognosis (forecasting the course of the illness or condition). Case controlled studies compare what happens to different groups of people over time.

Sometimes young people we interviewed used the word ‘trial’ to describe other types of research and were not always clear about the difference. (See also ‘Why do we have clinical trials in children and young people’ for an explanation of the different types and stages of clinical trials and ‘Different types of trials’.) 
Heather, aged 18, and her brother Christopher, aged 17, took part in a research study comparing development in healthy children with the development of children with ADHD (attention deficit and hyperactive disorder). Heather and Christopher’s mum responded to an advert looking for healthy children volunteers. They had plenty of information and everything was clearly explained to them, including what it involved and how long it would take.
Christopher also had to do the same tests as Heather and says taking part to help other children and medical science was really exciting.
Both Kerenza, aged 15, and Alisha, aged 13, are taking part in a research study on understanding arthritis in children and young people. Kerenza completes a questionnaire every year and will continue to do so till she reaches 21. 
Like Kerenza and Alisha above, Georgia, aged 10, is taking part in a study on arthritis in children and young people. Georgia can’t remember exactly when she was first invited to take part, but helping researchers and helping other children in the future were reasons Georgia was happy to take part.
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Kay has taken part in two clinical trials on improving treatment for cystic fibrosis. At the same time as taking part in the second clinical trial, Kay was invited to take part in a different type of research study. She asked her consultant and the clinical trial researchers for their approval and opinion first. She has been in the study for three months and has one more month to go. 
Fflur, aged 12, was diagnosed with connective tissue disease with features of arthritis, scleroderma and dermatomyositis when she was 11. (Connective tissue diseases are a family of closely related disorders that include: rheumatoid arthritis, systemic lupus erythematosus, polymyositis-dermatomyositis, scleroderma and various forms of vasculitis. They affect the immune system and can affect the function of many organs.) Recently Fflur took part in a three month research study to help find the best way of taking blood samples. This involved having blood samples from veins and a blood spot test that involves a simple pin prick to the finger. 
Fflur enjoyed taking part because it will help other children in the future.
Jhon is taking part in a research study to improve knowledge on asthma. Jhon’s parents agreed to him taking part soon after Jhon was born. Even though Jhon doesn’t have asthma he continues to be part of the study. Once a year his parents complete a questionnaire about Jhon’s health, and, they will continue to do so until he is 18, when Jhon will complete the questionnaires himself. He recently took part in the second stage of the study.

Last reviewed March 2017.
Last updated July 2014.


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