Research Changes Lives

Research can save lives, find new treatments and help people be healthier and happier for longer. Doctors, nurses and other health and social care professionals learn more by doing research. 

But this is only possible when people, including children and young people, take part in research studies.

Why take part?

• You may want to improve health and care for everyone, or because someone you care about has an illness
• If you have an illness or condition, you might be able to try a new treatment
• You might learn more about your condition
• Your health may be monitored if you take part in some studies
• You will help researchers learn important new information

Ask your doctor, nurse or healthcare professional about research you can take part in, or visit: be part of research.nihr.ac.uk/ for details about studies open locally and nationally

Both units at NUH and UHL run Clinical Research studies that aim to improve outcomes for our patients. Research into cancer in children and young people is one of the main reasons the cure rates today are much better than just a few decades ago.

There are different types of research studies. Some just collect blood samples or observe patients having normal standard treatment. Others involve experimental treatment. These are called clinical trials and often compare a new treatment to the current best standard treatment.

People often think of clinical trials as testing a new drug, but clinical trials look at lots of other things too. In fact, some trials may experiment with giving less treatment than what is given as standard to see if this works just as well but with less side-effects. Learning how to treat efficiently while reducing both short term and long term side effects is an important aim in children's and young people’s cancer research studies.

If we have a study open that is suitable for you, your Doctor or Research Nurse will discuss it with you. It is up to you and your family to decide if you want to take part in research, research is voluntary. Your Doctor or Research Nurse can give you information about it, explain it to you and answer any questions you may have, but they cannot tell you whether you should take part. You have to do what feels right for you. Whatever you and your family decide will be supported by the medical team.

All studies are different. Taking part in a study may sometimes involve some extra visits to the hospital and extra tests but for some studies, it is not much different to going through normal standard treatment. It is important to get a full understanding of the study before making a decision. If you enter a study and then later change your mind, you can withdraw at any point.

Some people worry about being used as “guinea pigs” if they take part in Research. However it is important to remember that no research will take place without you and your family’s consent after being informed about the study. It is also important to know that all research projects are reviewed and approved by independent ethics committees before they can open, and that everyone in research works to strict regulations to ensure that the results produced are credible and the rights and safety of research participants are protected.

Please don’t hesitate to ask about research - Your Doctor and the Research team will always be happy to talk to you.

Here is a link to the Teenage Cancer Trust website for more information on clinical trials - What are Clinical Trials?