What happens if I decide to take part in research?

If you and your family are invited to take part in a research study, someone from the research team will explain the study to you and you will be given information sheets to take away and read. These include lots of information about the study, including its purpose and what will be expected of you and your family should you decide to take part.

You may find it helpful to discuss the study with friends, relatives and other people who care for your family and to write down possible questions to ask the research team.

Details of contact numbers for the research team will also be given so that you can ask for more information about the study before making a decision.

Informed consent

Informed consent means you will need to know all the facts about a study before deciding whether or not to take part. You and your child will be asked to sign consent and assent forms if you agree to take part. However, even after you have signed these forms you can stop taking part in the study at any time.

Research visits

Whenever possible we will try and make sure that any visits to the hospital are arranged at the same time as routine clinic appointments to save you time and cut down on the number of hospital visits. However, you will always be reimbursed for out of pocket expenses such as travel costs if you are attending hospital purely for research purposes.

Many of our studies are carried out in the Clinical Research Facility, separate from the main clinical areas of the hospital.

Risks in taking part

Each research study has its own risks and the research team must tell you about them before you agree to take part in the study. Details will also be written into the information sheets.

All clinical research in the UK has to meet the same regulations as medical practice. In addition there are many local, regional, national and international regulations that apply specifically to research.

Deciding not to take part

Remember that any involvement in research is voluntary and you don't have to take part. It will not affect your child's ongoing treatment if you refuse and you don't have to give a reason for refusing. You might be asked why you decided not to take part to help the researchers find out if there is anything that they can change or improve in future.

Your child will always have the best possible care as a patient, whether or not you decide to become involved in any research.