How has COVID-19 impacted on The ENDIA Study?

Firstly, ENDIA is definitely continuing! We want to say a big thank you to families that have adjusted to these significant changes to all our lives, let alone to help keep The ENDIA Study going! We’re delighted to say that the majority of families have continued to provide information and samples to the Study to enable us to go on.ENDIA had to bring in a number of changes during the early stages of the COVID-19 outbreak to ensure the safety of our participants, families and staff. Our processes have been flexible, responsive and regularly reviewed to ensure they meet clinical and ethical considerations.

Visits have been adapted depending on the age of the participant (i.e. pregnancy, birth, early infancy, and childhood), the child’s autoantibody status, and where in Australia they are located. There has been no one size fits all solution to adapting the ENDIA Study to COVID-19 across Australia.

Before any visit, the ENDIA Team will ask some standard questions about symptoms and potential exposure to the virus. If you answer yes to any respiratory symptoms, or potential or actual exposure to COVID-19, the visit will be rescheduled. If you live in an area where an outbreak has been identified, your visit may also have to be rescheduled. Your ENDIA coordinator will discuss the options with you when calling to make your next visit.

I am enrolled in ENDIA and just had my baby. Is it safe to have a visit with a new baby?

ENDIA is internationally unique among T1D studies as we are the first to investigate how exposures during pregnancy and early life might contribute to a child’s risk of developing T1D. For that reason, we are still very keen to collect samples and data from mums and bubs in ENDIA.

We want families to feel comfortable and confident with having a study visit and how the visit is conducted. Our staff will discuss the options with you.

Our team have implemented some changes to how our visits are delivered to reduce the potential risk of exposure, and ensure social distancing. This includes using telephone, email or the app to complete questionnaires, reducing the time of study visits, and limiting the number of people allowed in one room at a time.

Will the ENDIA swabs test for COVID-19?

One of the tests that we plan to perform on the swabs collected in ENDIA involves a very new and sensitive technology that enables researchers to detect all known human viruses at the same time in a single sample. The ENDIA team published the first ever study to use this technology on samples collected from pregnant women in 2019, and a follow-up study looking at viruses in some ENDIA babies earlier this year.

Although the virus that causes COVID-19, a coronavirus called SARS-CoV2, wasn’t discovered until late 2019, the virus detection system may still be able to find it because of similarities with other coronaviruses. Importantly, however, the virus detection system has not been tested and authorised for clinical diagnostics. The platform is for research only. This does not mean the results are not accurate, just that it hasn’t been through the regulatory pipeline that is required for normal diagnostic tests such as those ordered by your doctor. We therefore cannot tell you whether samples collected from you or your child test positive for SARS-CoV2. In addition, the samples that we collect spend several years in frozen storage before we investigate them. If we did find SARS-CoV2 in the samples, the individual that was infected would have long recovered and would no longer be infectious to others.

As well as the swabs, the ENDIA study researchers may investigate whether the blood samples collected from you and/or your child contain antibodies against the SARS-CoV2 virus. This would be a sign that a person has had COVID-19 at some point before the sample was collected. Antibodies remain in our system for a long time after an infection so it would not be possible to determine when the infection happened. Moreover, it might be several years before these experiments are performed and any infection would long since have cleared.

I collected samples for my family and stored them in my freezer. When will they be collected?

All of the laboratories that receive and analyse our study samples are opening back up. Your local ENDIA Coordinator will make contact with you to organise a convenient time that they can come and collect these samples. This will have to be a time when you are home because we will take the samples directly out of your freezer and transport then using dry ice from your home to our laboratories. This will maintain the quality of these samples during transportation.

Can my child’s risk of developing type 1 diabetes be measured on samples other than blood?

Unfortunately, no. To determine the risk for developing type 1 diabetes, the early markers known as islet auto-antibodies can only be detected in the blood. So, to determine if your child is at risk, a blood test is required.

Is it safe to have a blood test at this time?

We understand some people may be anxious about leaving the home or accessing a health care facility at this time. However, we have processes in place to minimise contact, including booking in a specific time for your visit and blood collection and isolating participants from one another.

Although we postponed some blood tests for recent visits due to COVID-19 restrictions, information from pathology collection centres and other health venues suggest that this procedure poses low risk, as it takes less than 15 minutes to obtain. As restrictions remain in place, the blood test may be the only sample we collect for a period of time, to ensure shorter study visit periods. We may ask you to collect the rest of the Study samples at home. Your ENDIA Coordinator will arrange with you to collect them.

We are participating in the Regional Program; should I visit my GP to get my child’s blood test?

Ideally, we recommend attending your local pathology collection centre. However, if you are attending your GP or other health practitioner for a blood test, you could take the ENDIA pathology request form for them to collect the sample at the same time to avoid a second needle/visit.

You can find your nearest pathology collection service by clicking on these links:

Can I still enrol as a new participant in The ENDIA Study?

Unfortunately, no new participants can be enrolled into ENDIA. Recruitment to ENDIA completed in November 2019 when we reached our target number of 1500 participants. If you, or a family member are aged 2-30 years and interested in organising type 1 diabetes risk screening, consider Type1Screen: You can contact the team directly by email:, or by calling (03) 9342 7063.

Where can I find reliable and up to date information about COVID-19?

Trusted information can be found at the following sites: