Information for Young People
We have put together some questions and answers that will help you understand what health research is and how you can help.
What is SHARE and how does it work?
SHARE - The Scottish Health Research Register and Biobank, is a register of people aged 11 years and over, who are interested in helping health research and being contacted by SHARE if a relevant health project becomes available. SHARE uses NHS IT systems to match people to the right health project. SHARE’s aim is to help improve healthcare in Scotland for all ages by helping researchers find suitable volunteers for health research projects.
What is health research?
Health research projects or studies as they are often called, are medical research projects involving people. Health research tests whether particular treatments for various medical conditions are safe and how well they work. Projects can be anything from filling in an online questionnaire about your diet and exercise habits, to testing a new medical device or new medications for a particular condition e.g. if you have asthma, you might be asked if you would like to test a new inhaler.
We need healthy people and those with medical conditions to join. SHARE also seeks your permission to keep any leftover blood following routine tests (e.g. if you have given a blood test at your GP). This leftover sample is anonymised and can be used to help genetic research.
Why is health research needed?
Health research is needed so that researchers can discover new ways to prevent, detect and treat conditions or diseases like anxiety, cystic fibrosis, leukaemia and epilepsy. Research can also look at ways of improving the quality of life for people with chronic illnesses like asthma and diabetes.
Why sign up to SHARE?
Quite often, children and young people need different treatments from adults because they are at a different stage of development. They can respond to treatments differently because they are still growing. There are also some conditions that only affect young people, so it is important we find a way of treating these conditions.
Why do people take part in health research projects?
People take part for a variety of reasons such as wishing to help others, contributing to future healthcare and sometimes to receive the most advanced treatments available for a particular condition.
How do I sign up to SHARE?
You can join by completing our online registration form. If you are under 16 years of age, please complete this with your parent or legal guardian.
Will I need to stay in hospital if I take part in a research project?
It depends on the project. Most projects involve filling out a survey, speaking to an interviewer, helping the design of new guidelines, testing a new medication for a particular condition or visiting the hospital (day visit) to help test the effectiveness of a new medical device. Each project is different.
Do I have to take part in a project if I am contacted?
No, you can choose which projects you would like to take part in. The decision is entirely yours to make and you can change your mind at any time throughout the project.
Why have I been contacted to take part in a study?
Researchers may be looking for volunteers with a particular health condition or they may need healthy controls i.e. people who do not have the condition or disease being studied. Results from healthy controls are compared to results from the group being studied.
Who can I speak to if I have any questions?
You can call the SHARE Team who will be able to help answer any questions you have. If you are under the age of 16, you can call us if you have your parent’s/guardian’s permission.
We can be contacted by phone on 01382 383471 or by email: [email protected]