Research at GOSH

Research can improve children’s lives, offering new ways of treating diseases or developing new medicines. This information sheet from Great Ormond Street Hospital (GOSH) explains about the research we do and how to find out more.For some families where there is no existing treatment, research may offer some hope of a new therapy. It can help us understand why diseases occur and how to prevent them in the future. Research can also be about improving the care children, young people and families receive in the hospital. Some research directly benefits the people taking part, but other research is longer-term so may help people in the future. Our philosophy is that research is a key part of developing better care.

The research we carry out at GOSH is only possible because our children, young people and families volunteer to become involved. All our research projects are checked by an independent panel of experts (a Research Ethics Committee) to make sure that the research is necessary, of a high standard and will be carried out with the necessary safely checks.

All grades and groups of staff are involved in research to some level – we also have some staff who only work on research studies. It is likely that whichever ward you visit or team you see, a number of them, the people ordinarily looking after you, will also be involved in a research study.

This depends on the type of research project, some involve just a questionnaire, others a sample such as saliva (spit), urine, blood or an X-ray or imaging scan. Some studies for instance of a new medicine, will involve more visits and checks on safety and whether it is working. Study visits will aim to coincide with routine clinical visits but where more visits are needed, often travel and other reimbursements may be offered. The researcher will be able to tell you where the research project will take place and what it might involve.

We are keen to highlight to you research studies that may be relevant to your child. So you may be approached by a member of staff during your visit or stay to discuss research. The researcher will give you as much information as you want about the study and answer any questions. If everyone is in agreement, a formal consent will take and when possible, your child will be asked if he/she is willing to take part. Nearly always, there will be plenty of time for you to consider this carefully and talk to others about it before reaching a decision. However and in rare situations, for instance for studies in critically ill children, the doctors and nurses will have worked with the independent Ethics Committee to understand how to ensure participating families can provide consent.

The decision whether to take part or not is entirely up to you. Whatever you decide, we respect that decision and it will not affect your child’s care at GOSH at any point, now or in the future.