Frequently Asked Questions

What is type 1 diabetes (T1D)?

Type 1 diabetes (T1D) is an autoimmune condition where the immune system attacks the (beta) cells of the pancreas that make insulin. Without insulin, blood glucose becomes dangerously high and life threatening ketoacidosis develops.

Type 1 diabetes is a lifelong condition affecting 1 in every 200 Australians and New Zealanders.

Most diagnoses are made in childhood and adolescence, but around a third of cases are diagnosed in adults.

What is an autoimmune condition?

An autoimmune condition is a disorder of the body’s immune system. The immune system attacks and destroys otherwise healthy parts of the body because for some reason it mistakes it for an infectious organism such as a virus or bacteria.

Other autoimmune conditions include: rheumatoid arthritis, multiple sclerosis (MS), hashimotos thyroiditis, lupus, psoriasis, and coeliac disease.

What is an antibody?

An antibody (Ab), also known as an immunoglobulin (Ig), is a Y-shaped protein found in our blood (and in our logo!) Most antibodies recognise and bind to small parts of viruses and bacteria to help the immune system fight infection and disease.

What is an autoantibody?

An autoantibody is an antibody (a type of protein) produced by the immune system that attacks healthy proteins. In some cases, autoantibodies contribute to organ damage by directing other parts of the immune system to attack. Autoantibodies are often the first sign of an autoimmune condition.

Type1Screen looks for diabetes-related autoantibodies because they are early markers of the autoimmune process that attacks the pancreas to cause type 1 diabetes.

What causes type 1 diabetes?

We don’t know what triggers the autoimmune response that ultimately leads to type 1 diabetes. We do know that it can start in early life, possibly during pregnancy.

People who develop type 1 diabetes tend to have genes that put them at higher risk of developing the condition. These genes provide the instructions for making immune proteins that bring about an autoimmune attack on the pancreas.

Research has found links between type 1 diabetes and:

• family history
• genetics
• ethnicity
• type of birth (vaginal vs caesarean)
• viruses
• bacterial infections
• nutrition
• hormones
• serious life events
• stress

The Australian ENDIA Study is the first in the world to follow babies from the pregnancy through childhood to identify factors that trigger type 1 diabetes. If we can identify and remove these triggers, we might be able to prevent type 1 diabetes.

How does type 1 diabetes develop?

We do not fully understand how type 1 diabetes evolves after antibodies are detected. Current research suggests that the autoimmune attack progressively destroys the ‘beta’ cells in the pancreas that make insulin. After many years, there are insufficient beta cells, the glucose levels rise, and insulin injections are needed.

There are three distinct stages of the development of type 1 diabetes:
1) The immune system attacks the insulin-producing beta cells in the pancreas. Blood sugar levels are normal, but autoantibodies can be detected in the blood. There are no symptoms.
2) Autoantibodies are present in the blood. Blood sugar levels are out of normal range. There are no symptoms.
3) The immune system has killed large numbers of pancreatic beta cells. Autoantibodies are present in the blood. Blood sugar levels are abnormal. The symptoms of T1D are present.

What are the symptoms of type 1 diabetes?

Remember the five Ts of type 1 diabetes:

1. Tired: feeling more tired than usual
2. Tetchy: feeling irritable or moody
3. Thirst: being very thirsty and not feeling able to quench that thirst
4. Toilet: needing to urinate more than usual. For babies, this can lead to more frequent wet nappies. Affected toddlers and young children may revert to bed wetting or wetting pants after completing toilet training.
5. Thinner: losing weight or not gaining weight normally in childhood

These symptoms are commonly mistaken for flu or another illness. Delays in diagnosis can lead to developing a life-threatening condition called ketoacidosis.

If you, or someone you know, has symptoms of type 1 diabetes seek urgent medical attention and request a finger prick blood glucose test.

What is Diabetic Ketoacidosis (DKA)?

Without insulin, the body cannot use glucose for energy. The liver responds by releasing more glucose into the blood, leading to high glucose levels and symptoms like thirst and frequent urination. The liver also breaks down body fat to make an alternative energy source called ketones. While these ketones sustain vital organs like the brain, they also cause acids to build up, leading to fatigue, nausea and, ultimately, coma. This critical illness, characterised by dangerously high levels of glucose, ketones and acid, is called diabetic ketoacidosis or ‘DKA’.

Signs and symptoms of DKA include:

• rapid breathing
• fruity odour on the breath
• nausea
• vomiting
• facial flushing
• stomach pain
• thirst and dry mouth

If these symptoms develop, seek immediate medical attention and request a finger prick blood glucose test.

How is type 1 diabetes treated?

Daily insulin injections, good nutrition and exercise help control glucose levels and prevent ketoacidosis in type 1 diabetes.

A healthcare team of doctors, specialist nurses and dietitians help devise and monitor a personalised treatment plan for each affected person.

Is there a cure?

Not at the moment. However, researchers are actively searching for one. There are clinical trials aiming to delay the onset of stage three clinical diabetes.

If I have type 1 diabetes, will my child(ren)?

Although type 1 diabetes runs in families, very few children born into these families develop the disease. The risk is around 1 in 40 for children with a family history, compared to less than 1 in 300 for those who don’t.

Caucasians (white or of European origin) are at higher risk than people from other ethnic groups. Indigenous Australian and New Zealander peoples have a lower risk of developing type 1 diabetes.

Type1Screen aims to detect diabetes-related autoantibodies before symptoms appear. Finding type 1 diabetes in its earliest stage gives people the opportunity to prevent ketoacidosis and to participate in clinical trials aiming to slow or stop disease progression.

What happens if I test positive?

The Type1Screen team will contact you with the news and recommend that a second blood test be conducted to confirm the finding. The blood would need to be collected at a local pathology collection centre convenient to you. It would involve a needle in the arm to ensure a good quality sample and the most reliable result.

How do I get involved in Type1Screen?

Ready to take the next step? Click on this link to register your interest.

I am being asked to sign an updated consent form. Why do I need to do this?

In July we gained approval to move away from paper-based to online consent forms, and introduced finger prick testing. The consent form has been updated to include new information about these changes.

How does the new consent form differ from the previous version?

The new consent form describes the new procedures of online consent and finger prick testing. It also includes a new clause in Section 10 that allows for your sample to be shared with other researchers. This permission makes it easier for us to evaluate new antibody assays and may assist researchers in other fields discover new ways to improve healthcare. Section 16 of the new consent form also includes a sentence stating that de-identified data collected by this project will be stored for the purpose of assisting future research into diabetes and other fields.

I am having trouble with the consent and registration process. Are there any instructions to follow?

Our consent and registration process can be a bit time consuming and may not be intuitive. Click here for a step by step guide.

How are finger prick samples analysed?

When the blood spot arrives in Melbourne it is placed in the freezer. On the day it is tested, a 3mm disc is punched out and placed in saline. The blood sample transfers from the paper to the saline over 2 hours and then a small amount is removed and tested.

Are the tests the same?

No. The venous blood test (needle in the arm) measures the insulin, GAD, IA-2 and Zinc antibodies. The capillary blood test (finger prick) uses a different method and only tests for three antibodies (insulin, GAD and IA-2). It is unusual for someone with only a Zinc antibody to develop type 1 diabetes.

Which test is best – needle or finger prick?

Neither test is perfect. Some people who test positive for antibodies never develop diabetes. Others who test negative can still develop T1D.
Pros of finger prick testing: 1) easier to collect, 2) more convenient, 3) cheaper, 4) do it at home, 5) easy to send and store. Cons of finger prick testing: 1) smaller amount of sample, 2) cannot detect low levels of antibodies, 3) may return a positive result in someone who does not have antibodies (a ‘false positive’), 4) anyone who tests positive on the finger prick test needs to follow up with a venous blood test to confirm the result. Think of the finger prick test as a way to identify people who need to go on to have the venous blood test.

I live in New Zealand, can I or my child get screened?

Unfortunately, there is no longer a Type1Screen hub in New Zealand. However, we may be able to attempt a screen using the finger-prick blood-spot screening method. The issue would be the time delay and quality of the sample. Contact the team to discuss this further.