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.
"We wanted to make sure we were involved in the most cutting edge genetic tests."
Georgia, age 4, and her family took part in a genetic study
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.
Did you know? In 2014-5, staff undertook over 200 research studies of medicines or therapies with children at GOSH.
Who does research at GOSH?
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.
Did you know?
Research takes places in over 50 specialties at GOSH every year.
Over 3000 patients take part in research at GOSH every year.
What could taking part involve?
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.
"I joined the trial to help me and my family with my genetic condition. Being in a trial is fun, you get to do fun things and the injection and blood tests only take a few minutes and then the rest is all fun."
Lottie, age 10, took part in a kidney study with her brother Ashley who is 9 years old
Hearing about research opportunities
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.
Alice, age 11, took part in a trial to find out if a drug licensed for use in adults would also work for children. It needed to be tested to see if it was effective in the smaller doses needed for children without causing serious side effects.
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.
Please note this is a generic GOSH information sheet. If you have specific questions about how this relates to your child, please ask your doctor. Please note this information may not necessarily reflect treatment at other hospitals.