UK Children's Diabetes Research

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The Genetics of Type 1 Diabetes:
Information sheet for 12-16 year olds

Introduction

You have probably often asked why you got diabetes, yet your friends and relatives did not. We believe that this relates to the genes which we inherit from our parents: the genes being the building blocks which determine the colour of our hair and eyes and the shape of our bodies. Some of these genes have now been found and they determine how we respond to infections, diet and other things in the environment. If we could understand more about these genes, we might be able to improve the treatment of diabetes and eventually prevent it in future generations.

What is this study?

We have been approached by scientists from Cambridge who are collecting blood samples for genetic studies from 10,000 children and adults with diabetes throughout the country. By collecting so many samples, they will be able to discover the genes which may be involved in the risk of diabetes.

What will I have to do?

When you next go to the diabetes clinic or when you next have your annual assessment, we will take a little extra blood for these studies. We would need an extra 2-4 teaspoonfuls so the blood would have to be taken from a vein. As you know these blood samples can cause some discomfort, but we will put local anaesthetic cream on the skin an hour or so before.

What happens to the blood sample?

Your blood will be sent to Cambridge where it will be prepared in such a way that it will be possible to study the genes for many years and they will not ask for more blood.

No results concerning your own particular blood sample will be available, as the investigators will not know whose blood is whose. They will however let you know through your doctor how the study is progressing.

In the future, investigators may want to study other aspects of diabetes such as the causes of problems which may develop in the eyes and kidneys of people with diabetes. If this happens your doctor may ask you to give your consent to other information being sent for analysis. The blood sample will not be used for the study of any other genes and will only be provided to scientists involved in the study of diabetes and its complications.

What happens if I say yes and my parents say no?
What happens if I say no and my parents say yes?

We will always try to ensure that both you and your parents are happy to participate in the study. If after reading this information sheet, thinking it over for a few days and after discussing it with your parents, you decide not to give blood, that is OK. It will not affect your next visit to the clinic in any way.

How can I get more information?

If you want to ask questions, or require further information, please get in touch with either the doctor: or nurse in the clinic, [local clinical contact] or the investigators in Cambridge by email: ukgrid@paed.cam.ac.uk or telephone 01223 763130