UK Children's Diabetes Research

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The Genetics of Diabetic Complications:
Information for 10-16 year olds

What does the title mean?

When you have diabetes, the sugar levels in the blood increase and that is why we give you insulin, which brings the blood sugar levels back down. Over many years, high blood sugars can damage the kidneys. This is called a diabetic complication. Fortunately, this only happens to very few people with diabetes.

If there were two brothers and sisters with diabetes in the family and one had a problem with their kidneys, then the other one would be at greater risk of getting this problem. This is because the "risk" is partly genetic - it depends on the genes that you were born with that determine the colour of eyes and hair and in this case, risk of kidney problems. These genes are inherited from parents. We want to study these genes that change the risk for diabetic complications.

What happens if I agree to join the study?

The study lasts 4 years. Once a year, a nurse would see you in the Diabetes Clinic and we would ask you to help us in the following ways:

1. To study the "genes", we need a little bit of your blood. You probably have blood taken as part of an annual assessment or MOT clinic. We know that blood samples taken from a vein can cause some discomfort, but this is helped by putting "magic" EMLA cream on the skin before the injection. The blood sample will only be used to study "genes" related to diabetes and its complications. It will not be given to doctors studying other diseases.

   One day we will be able to let you know your blood has helped in our research, but we will not be able to tell you the result of your own tests, as the laboratory will not be given your name.

2. The blood you give each year will also be used to study fats in the blood. Fats that are in foods such as butter and oil can be taken into the blood stream and these levels tell us a lot about how your diabetes is controlled. It will also be used to check the HbA1c, or glycosylated haemoglobin - a test your doctor does all the time to find out how high sugar levels have been over the months.
3. To study the kidneys we need urine. Twice a year we would ask you to pee into a bottle for three mornings and bring the bottles up to the clinic. Kidneys make urine and we can tell by measuring proteins in the urine if there has been any damage from high sugar levels in the blood.
4. Finally, some time in the first year, we want to check your blood pressure throughout the day. If you feel your pulse at the wrist, the blood pressure is similar to the blips you feel. To measure it all day, you need to wear a cuff round your arm (just the same as in clinic), which is connected to a recorder, the size and shape of a Walkman stereo that you wear round your waist. The recorder measures your blood pressure every 30 minutes and it can be uncomfortable, particularly at night. If you were to find it uncomfortable, or a problem, you could stop the test. However, generally most people find it fun, particularly during the day.

   You will be provided with a blood pressure advice and diary sheet. It sounds rather complicated but the research nurse will show you how to use the machine and record all your days activities

What happens to all the information we collect?

Your doctor and the nurse will help with the collection of blood, urine and the blood pressure recordings. The information from over 1000 children will be collected in Cambridge. Your samples will be labelled with your own personal number. Your nurse and consultant will make all the arrangements and the laboratory in Cambridge will not be given your name and address.

If I decide to help with the study

What happens at the end of the study

We would like your help for the next 4 years. At the end of that time, we will be able to let you know how the study has helped us understand diabetes and its complications. We would also let your doctor know if there was any problem with your kidneys, although this is very unlikely.

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 and ensure that both you and your parents are happy with all parts of the study. If after hearing all the information you do not agree with your parents' choice, we might ask another diabetes doctor who is not involved with this study to speak to you. If that doctor feels you fully understand the reasons for entering or not entering the study, which ever is your choice, then we will go along with your wishes, even if it goes against the wishes of your parents.

If after reading this information sheet, and thinking it over for a few days and after discussing it with your parents, you decide not to participate, then that is OK. It will not affect your treatment or next visit to the clinic in any way.

What happens if I want to drop out of the study?

If at any time during the next 4 years you decide that you don't want to go on with the study, all you need to do is tell your doctor or study nurse. If it were your wish, we would destroy any blood or urine samples we had already collected.

How can I get more information?

If you want to ask questions or require further information, please get in touch with your doctor [doctor] or your nurse in the clinic [clinic].

If you'd rather, you could email the investigators in Cambridge at the following dedicated address:

ukgrid@paed.cam.ac.uk