Frequently Asked Questions

1. Why is The Repository being developed?
2. What is diabetes?
3. What is The Repository?
4. What is a gene?
5. What is DNA?
6. Can my family be a part of The Repository?
7. Confidentiality?
8. Who has access to the data?
9. Can I withdraw from the study?
10. How long will the study last?

1. Why is The Repository being developed?

Diabetes and its complications pose one of the major health problems for our country. Diabetes was recognized as Australia's fifth national health priority area in 1996. Since then, we have seen a rise in both types of diabetes in Australia. For example in WA there has been a:

• 3% annual increase in the incidence of type 1 diabetes (T1D); and
• 27% average annual increase in childhood-onset type 2 diabetes (cT2D).

2. What is diabetes?

Diabetes is the name given to a group of different conditions in which there is too much glucose in the blood. Glucose is the body's main source of energy. It is converted by insulin to a form that is stored in the liver until we need it.

In people with diabetes, the pancreas does not produce enough insulin. In some cases no insulin is produced. Without insulin, the glucose remains in the blood and can damage organs.

There are two main types of diabetes: Type 1 and Type 2. In Type 1 diabetes (T1D), the pancreas cannot produce insulin because the cells that make the insulin have been destroyed by the body's own immune system. The insulin must be replaced with multiple injections.

People with Type 2 diabetes are insulin resistant, meaning their pancreas can make insulin but the insulin is not working as well as it should. The level of glucose in the blood cannot remain at a safe level. In the past, Type 2 diabetes was commonly seen only in adults. However, due to a reduction in the amount of exercise and an increase in the consumption of energy-rich foods, children are now being diagnosed with this serious disease: child-onset Type 2 diabetes (cT2D).

3. What is The Repository?

The Repository is a bank for DNA. It contains small amounts of the DNA stored in a deep freeze for long periods of time.

The DNA bank for this project will be securely stored in Perth, Western Australia at The Western Australian Institute for Medical Research (WAIMR) at Royal Perth Hospital.

DNA samples are very important in modern medical research because scientists can use them to discover genes that cause diseases like Type 1 diabetes and childhood Type 2 diabetes.

No one will have access to DNA for The Repository without first obtaining ethics approval and requesting samples from WAIMR.

4. What is a gene?

• A gene is made up of DNA.
• A Gene contains the instructions to make a protein.
• Humans have approximately 30,000 genes.
• We inherit our genes from our parents.
• Genes are carried on chromosomes and are passed on rom parent to offspring. They are essential in the process which makes each one of us, right down to our looks and behaviour.

The Genetic Science Learning Center at the University of Utah has an excellent online Tour of the Basics explaining DNA and genes. The CDC in the US also has an interactive website designed to explain DNA and genes for children.

5. What is DNA?

• DNA stands for Deoxyribonucleic acid.
• It contains the genetic instructions on how we look and act.
• You inherit your DNA from both of your biological parents.
• An organism's complete set of DNA is called its genome.
• Diabetes has a genetic link passed down through our DNA; it is caused by particular genes.

The Genetic Science Learning Center at the University of Utah has an excellent online Tour of the Basics explaining DNA and genes. The CDC in the US also has an interactive website designed to explain DNA and genes for children.

6. Can my family be a part of The Repository?

• Do you have a child that has been diagnosed with Type 1 or child-onset Type 2 diabetes by a specialist (such as a Paediatric Endocrinologist)?
• If your child has Type 1 diabetes, were they diagnosed under the age of 35 years?
• If your child has child-onset Type 2 diabetes, were they diagnosed before their 18th birthday (i.e. 1-17 years)?
• Are you, as a family, happy to participate?

The Plain Language Statement explains more about the ACDDR. It is available for you to read, print and keep. It contains detailed information about The Repository and your role if you choose to participate.

If you have any questions about The Repository, or would like to help with this vital research, then please contact us.

7. Confidentiality?

Your information on the Medical History Form is the only details provided to researchers. Your confidentiality will be maintained at all times; no identifying information leaves the diabetes clinic where you are recruited.

8. Who has access to the data?

Samples and data will only be released to researchers with ethical consent from a recognised institution.

9. Can I withdraw from the study?

If, at any time, you would like to withdraw from the study, you are able. You will need to contact the diabetes clinic where you provided the saliva sample. They will provide The Repository with your code and your samples will be removed without using any identifying information.

10. How long will the study last?

The Repository began in 2006 and will continue for five years.