Frequently asked questions

Type 1 diabetes is an autoimmune condition where the body has mistakenly attacked itself. As a result, the body can no longer make the hormone insulin.

Insulin is an important hormone for maintaining healthy levels of nutrients in the blood, needed for energy and normal body functions, growth and development. Without insulin, blood glucose levels become dangerously high. If left untreated, this can become life-threatening.

Type 1 diabetes can be managed by taking insulin through injections or an insulin pump. Although it can be challenging to manage, children with type 1 diabetes live long and healthy lives. The earlier type 1 diabetes is detected, the sooner it can be managed.

Type 1 diabetes often develops in childhood but can be diagnosed at any age.

The condition can affect anyone – in fact the majority of people who get type 1 diabetes, do not have a family member with the condition. That’s why it’s important for children to be screened for type 1 diabetes, regardless of their family history.

It used to be thought that type 1 diabetes came on out of blue and children became sick very quickly, with little to no warning. However, we now know that type 1 diabetes can be developing silently for months or years before children start showing any signs. This is why screening is so important. It can help to identify type 1 diabetes before children become very sick.

There are three stages to type 1 diabetes.

• Stage 1: The autoimmune condition has started developing and the body is mistakenly attacking the important cells in the pancreas that make insulin. Some cells are being destroyed but the body can still make plenty of insulin and so children show no signs or symptoms. Early markers of the condition can be identified through screening.
• Stage 2: The autoimmune attack continues and many of the important insulin-making cells have been destroyed. This means the body can’t make enough insulin to keep blood glucose levels in the healthy range. Children with stage 2 type 1 diabetes likely have some increases in their blood glucose levels but usually not enough to cause any signs or symptoms. Early markers of the condition can be identified through screening.
• Stage 3: Most of the insulin-making cells have now been destroyed. The body can no longer make enough insulin and this causes high blood glucose levels. The first signs and symptoms of type 1 diabetes start appearing. They may be mild and be difficult to identify at first but will quickly become more severe, unless treated. If the diagnosis is delayed or missed, the condition will become life-threatening and require emergency medical treatment.

Type 1 diabetes can be difficult to identify in children, and 1 in every 3 Australian children are not diagnosed until they are very sick and need emergency medical care. Screening can identify if your child is developing type 1 diabetes, even before they feel any symptoms. We will be here to help and support you every step of the way. The earlier type 1 diabetes is detected, the sooner it can be managed.

It’s not known exactly what causes type 1 diabetes.

Some people are more likely to develop type 1 diabetes than others, based on their genes. Family history plays a role but isn’t the whole story – in fact 90% of people who develop the condition don’t have a family member with the condition.

Research suggests that something in environment then triggers the autoimmune attack to begin. This could be a virus, something in the diet or something else entirely during pregnancy or in early childhood. Researchers in Australia and around the world are working hard to find out.

While there is no known cure or prevention for type 1 diabetes yet, an early diagnosis may avoid serious health problems, improve long-term health and provide the opportunity to participate in clinical trials aiming to prevent or delay the condition.

Type 1 diabetes can be difficult to identify in children as there are no symptoms in the early stages of the condition. The condition can be developing silently for months or years before children start showing any signs.

By the time a child is presenting with symptoms, the condition has already progressed significantly. Even at this stage, diagnosis can be difficult as the symptoms are often vague and so are easily missed or confused with other common childhood causes. There are four common symptoms of type 1 diabetes.

Screening aims to identify children early, before they start developing any symptoms.

If you are worried about your child because you think they may have symptoms of type 1 diabetes, contact your doctor for a simple fingerprick blood glucose test as soon as possible.

Type 1 diabetes can be difficult to identify in children, and 1 in every 3 Australian children are not diagnosed until they are very sick and need emergency medical care.

Identifying type 1 diabetes early helps to:

• Avoid children getting very sick due to a late diagnosis
• Improve their long-term health
• Provide opportunities to participate in clinical trials aiming to prevent or delay the condition.

It used to be thought that type 1 diabetes came on out of blue and children became sick very quickly, with little to no warning. However, we now know that type 1 diabetes can be developing silently for months or years before children start showing any signs. This is why screening is so important. It can help to identify type 1 diabetes before children become unwell.

Screening can show if your child is developing type 1 diabetes, even before they feel any symptoms. We will be here to help and support you every step of the way. The earlier type 1 diabetes is detected, the sooner it can be managed.

This screening test will estimate your child’s chance of developing type 1 diabetes. It looks to see they have a combination of small variations in their DNA that are linked with childhood type 1 diabetes.

A child’s chance is not based a single high risk or a yes/no gene for type 1 diabetes. It is based on the combined impact from many small variations in their DNA linked with type 1 diabetes. This combined risk can be summarised into what’s known as a ‘polygenic risk score’.

It doesn’t mean a child does or does not have type 1 diabetes. It means they have a risk factor for developing the condition. Children with this risk factor can be offered further testing to pick up the very early signs of the condition, before they become sick.

Yes, the type 1 diabetes screening and follow-up tests are safe.

The screening test is a simple heel prick bloodspot and the follow-up test is a finger prick dried bloodspot. The screening test will be done by your GP or nurse. If required, the follow-up test will be done by your GP or nurse at your child’s routine 12 month appointment. Ongoing follow-up can be done by your GP/nurse, by you at home, or by your local participating pharmacy.

Yes, the screening test for type 1 diabetes is valid and effective. In fact, over half a million children have already been screened for type 1 diabetes around the world!

At this stage, screening for type 1 diabetes in Australia is still in the ‘pilot phase’ and is only offered to children aged 6 weeks to 6 months attending a routine immunisation and/or health check appointment. Research has shown it is best to offer screening before 12 months of age to identify children with an increased chance of developing type 1 diabetes.

Unfortunately, this means that your other child/children are not able to participate in screening at this time, unless they also meet the criteria.

The pilot aims to find the best way to offer type 1 diabetes screening in Australia and it is our overarching goal that screening will be available to all Australian children in the future.

At this stage, screening for type 1 diabetes in GP clinics in Australia is still in the ‘pilot phase’ and is expected to be available to eligible families from early to mid 2025.

We encourage you to discuss screening with your usual healthcare providers such as your GP and with your family. You can also speak with our team of health professionals and researchers via our helpline on 1800 505 909 or via email info@KidsDiabetesScreen.com.au

Most children (9 out of 10 children) will receive a normal test result. This means your child has a very low chance of developing childhood type 1 diabetes in the future. Less than 0.1% will develop the condition during childhood. Children with a normal screening test result will not require any further follow-up testing.

A positive screening test result means your child has a risk factor for developing type 1 diabetes in the future. It is not a diagnostic test and it does not mean your child has, or definitely will develop, type 1 diabetes.

One in every 10 children has an increased chance of developing of type 1 diabetes. However, only a small number (1 in every 40 children) will develop the condition in childhood.

We do not know which children will or won’t develop type 1 diabetes, so all children with an increased chance will be offered free follow-up testing. This follow-up test shows if they start developing the condition, even before they feel any symptoms.

We will be here to help and support you. The earlier type 1 diabetes is detected, the sooner it can be managed.

Children with an ‘increased chance’ of type 1 diabetes, based on their screening test will be offered free follow-up testing that can detect type 1 diabetes, even before symptoms appear.

The follow-up test looks for the development of islet autoantibodies. It involves a small prick on your child’s finger to collect a few drops of blood. It can be done by your GP or nurse at your child’s routine 12 month appointment.

Screening samples are analysed by our co-investigators at Pacific Northwest Research Institute, University of Washington, USA. This research collaboration between the University of Washington and University of Sydney means your child’s sample will be analysed by the leading researchers in genetic risk for type 1 diabetes. Samples are sent using a biopharmaceutical courier, directly to the lab. Samples are coded, meaning no personal information is ever provided and the lab will not be able to identify your child. The type 1 diabetes genetic risk test only looks for specific changes in a very small number of genes that are associated with an increased chance of developing type 1 diabetes. Samples are likely to be entirely used in the analyses but if a portion remains, it will be either destroyed or returned to the University of Sydney. This means no biological material will be stored overseas. The University of Washington will not store or have any ownership over any of your child’s genetic information.

Follow-up autoantibody testing samples are analysed by our co-investigators at the Royal Melbourne Hospital in Victoria, who are experts in analysing and interpreting autoantibody results for early-stage type 1 diabetes. Samples will be sent direct, using a biopharmaceutical courier company as coded samples only, with no personal identifying information provided. The Royal Melbourne Hospital will not store or have any ownership over any of the results.

If you have forgotten your username or password you can reset it here

Yes. If you have lost your child’s follow-up test kit it can be replaced. Contact the study team via the helpline on 1800 505 909 or via email at info@KidsDiabetesScreen.com.au to organise a replacement kit.

NOTE: Each test kit is registered to a participating child and cannot be used by any other person. Do not use anyone else’s kit or allow your kit to be used on a child other than your own.

It’s OK if you don’t want to take part anymore. You are free to withdraw at any time without giving a reason and your decision will not affect the care you receive from your usual healthcare team.

You can withdraw at any time by logging in to your online account. Alternatively, you can contact the research team or via email on info@KidsDiabetesScreen.com.au or the helpline on 1800 505 909.

If you withdraw from the pilot, we will not collect any more information about you or your child. Any information already collected will be kept to ensure the results of the pilot are accurate. All information will remain secure and confidential.

This is a ‘not for profit’ study led by the University of Sydney with collaborating universities and hospitals around Australia.

The study is funded by a research grant from JDRF. JDRF is the leading supporter of type 1 diabetes research in the world, working towards a world without type 1 diabetes.

The Type 1 Diabetes National Screening Pilot is a national research study that aims to find out if and how screening for type 1 diabetes should be offered to children in Australia.

While there is no known cure or prevention for type 1 diabetes yet, an early diagnosis may avoid serious health problems, improve long-term health and provide the opportunity to participate in clinical trials aiming to prevent or delay the condition.

Screening children for type 1 diabetes is safe and effective and is underway in many places around the world, including the USA, UK, Germany and Sweden. There are three different ways to screen, and we do not know which is best, so this study aims to find this out.

Yes. This pilot has been approved by the Sydney Children’s Hospitals Network Human Research Ethics Committee (Approval Number: 2024/ETH02146). If you have any concerns or complaints, you can contact the HREC Executive Officer on (02) 7825 1253 or SCHN-Ethics@health.nsw.gov.au.

As part of this pilot, we want to understand what families think and feel about screening for type 1 diabetes. Parents/Guardians will be asked to answer online surveys questions during the screening process to help researchers understand if and how screening should be offered as a national program in the future.