Research FAQs

We carry out different types of clinical research at our Trust and this includes ways to test or compare treatments such as drugs or methods of surgery, physical therapy or other types of clinical care.

Our research can involve one or more of the following:

• using information from health records
• questionnaires or interviews with patients and parents
• taking measurements (for example your weight, height or blood pressure) or collecting tissue samples (for example blood or urine)
• testing new methods of therapy, medicines or surgical procedures

When you take part in clinical research it usually involves one or more visits to a hospital clinic, GP surgery or research unit within a hospital. Sometimes an overnight or longer stay may be needed. How often you need to take part in research visits and how long each appointment lasts depends very much on the type of research you are taking part in.

On your research visits you will get the treatment or care specific to the ‘research project protocol’ – this may involve giving you a medicine to take, having some tests such as x-rays or MRI scans, completing questionnaires or providing samples for testing.

Depending on the type of research, you may be monitored to see whether the treatment that is being researched is working and to check your health while you are taking part in the research. Before the research begins there may also be visits and tests that you have to complete to check that you are able to take part in the research.

Sometimes the appointments are at the weekend or in the evening which may make it more convenient for young people and their parents to get involved in research. On some occasions the researchers can come to the participants’ homes to take blood samples and give treatments.

It depends on the study. We will usually invite children who have a particular illness to take part in a study. Sometimes we might ask for parents to take part as well. There are also studies which ask for healthy volunteers, sometimes adults and sometimes children. Our Clinical Genetics team do a lot of research involving adult patients as well as children.

Taking part in a study may or may not help you feel better, it may or may not make your illness improve. Therefore you might not benefit yourself, but by taking part in research you could help researchers learn something important that could help other children or young people in the future.

From the research you take part in, we will be able to:

• gain new information about how new or existing medicines affect illnesses
• help develop better and more effective treatments for people
• improve our understanding of medical conditions
• gather new information about whether some methods of treatment are better or worse than others
• determine how safe new medicines and treatments are

Before you decide to take part in a research study, you need to know as much as possible about it. The following is a list of important questions you might want to ask. Not every question applies to every study, but you are free to ask as many questions as you want before you decide to take part:

• will I benefit from taking part in this study?
• who is doing this study and what questions might it answer?
• will this research help me to understand my condition and if so, how?
• will I miss out on any ‘normal care’ by participating in this study?
• what tests or procedures will be done?
• what alternatives are available if I decide not to participate in the study?
• is it possible that I will receive only a placebo (dummy pill) during a clinical trial?
• what could happen to me, good or bad, if I take part in a study? / what are the risks?
• how long will the study last?
• what will happen to samples I give?
• who has reviewed/approved this study?
• if I have a condition, could it get worse during the study?
• will I be charged anything or paid anything to be in this study?
• if I decide to participate in this study, how will it affect my daily life?
• what will happen to me at the end of the study?
• will I be told the results of the study?
• what happens to my personal information collected during the study?
• who will find out that I am taking part in this study?
• how do I end my participation in this study if I change my mind?
• who do I contact for questions and information about the study?

Yes, you can change your mind at any point in a study. You don’t have to take part in a study if you don’t want to.

Nobody will be upset with you if you say no and it is also ok if you agree to take part and then you change your mind later. You can change your mind any time, without giving a reason. Your care at the hospital won’t be affected.

We will keep your information in confidence. This means we will only tell those who have a need or right to know. Your information will be seen by the people who are part of the research team.

Special forms are used to record the study information, called study records. We will not use your name in the study records, but will give you a unique number, so no one will know who you are when they look at the study records.

The study doctor and study staff will handle your personal health information in a confidential manner that is required by law.

Details about medical data protection will be provided to you or your parent(s)/guardian.

Some studies will tell you what they find after the information that has been collected has been studied and the final reports written up, but other ones will only give you this information if you ask for it, and some don’t tell you at all.

Ask the research team or your doctor if you’ll receive a report about your study when it ends.

Email our Research & Innovation Department or ring us on 0114 271 7417.