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Great Ormond Street Hospital for Children NHS Trust UCL Institute of Child Health
 

Children and families

Research

How we do research

Why we do research

Research can be about finding cures for serious illnesses

Children with a severe form of aplastic anaemia used to do extremely badly when they had a bone marrow transplant. Now nearly all children in this position do very well.

Research can be about better ways to do things

Children with a particular problem in the connections between their lungs and their heart used to need open-heart surgery. Now in some cases we can replace the valve without surgery.

We've found out how to administer certain epilepsy drugs in a more effective way, with fewer side effects.

Research can be about improving the care children and their families receive

A study in 11 intensive care units showed that parents wanted more hands on involvement in controlling their child's pain. We showed a link between how stressed the parents felt and the pain the child went through. This will help doctors and nurses provide better care for the children and their parents.

Why research is important

All these improvements and many, many more came because families were willing to take part in research. Not every research study leads to a headline-grabbing cure - some research throws some light on a problem - many problems are like jigsaws, which need many different studies before we can see the whole picture. But without research we cannot develop better cures, and better ways of caring.

While we think research is important, it is a very personal decision whether to allow your child to take part. You should make sure you understand what is involved and you should feel free to say 'no'. Staff will not put you under pressure and your child will be considered just as important, whether they take part in a study or not.

What does a research project involve?

Research is usually carried out by hospital staff as a project, organised in a specific way, to get the best information with as little impact on patients and families as possible. Companies that make medicines or equipment or large charities also carry out research but they always work alongside hospital staff.

Before a project starts, the person doing the research has to think carefully about what they are aiming to achieve and how they are going to achieve it. Once they have decided this, an independent Research Ethics Committee will check the project is worthwhile, well organised and above all, safe for the people taking part.

Before you agree to take part

A member of staff from the hospital or the Institute will talk to you about the project and explain in detail what it will involve for you and your child. They will also give you an information sheet to read, which explains about the project. You should keep this to refer back to for information about the study or the contact details of the researchers.

You are encouraged to ask any questions you like before you agree to take part, or have your child take part, in the project. Some questions you might want to ask are:

  • Why is this project being done?
  • What will my child or I have to do if we agree?
  • Are there any risks?
  • What happens if something goes wrong?
  • Will you tell me the results of the project?

Take time to think about the project and the answers you were given to your questions, and talk it through with your child, family or friends. If you are at all unsure about any aspect of the project, you should contact the researcher. His or her contact details are on the information sheet.

You should only sign to give your permission if you feel certain you understand the project and what it will involve for you and your child. If you change your mind later, you can drop out of the project at any time, without it affecting your child's treatment in any way, now or in the future.

What happens next?

This depends on the research project. Some projects involve giving your child a different form of treatment, or an extra procedure like a scan, or just asking you and your child some questions.

The researcher should be able to give you an idea of when the project is due to finish. If you would like to hear the results of the project, ask him or her to let you know.

If you have any questions about any research project taking place at Great Ormond Street Hospital or the Institute of Child Health, please contact the Research and Development Department on 020 7905 2179.