Who is Eligible?

If you, your partner or child have type 1 diabetes, and are about to welcome a new baby to your family, you are probably eligible to participate in ENDIA.

This is the only study in the world to follow babies from the pregnancy, so enrolling families as early into the pregnancy (or as soon after birth) as possible will provide the most helpful information.

Current
participants
59% of target!

Target

1400
59%

Current

827

Who can participate?

If you, your partner or child have type 1 diabetes, and are about to welcome a new baby to the family, then your family may be eligible to participate in the ENDIA Study.

If you, or one of your family members, meet one of the eligibility criteria below, consider participating in ENDIA; we’d love to hear from you. Click the “Participate in ENDIA” button to the right to contact us and find out more.

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A pregnant woman with type 1 diabetes

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A man with type 1 diabetes whose partner is pregnant

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A child with type 1 diabetes whose mum is pregnant

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A baby aged less than 6 months whose parent or sibling has type 1 diabetes

What Does Participation in ENDIA Involve?

Watch this video made by ENDIA’s Lead Investigator, Professor Jennifer Couper, and some of our participants as they tell you more about the ENDIA Study.

ENDIA staff follow-up participating babies at regular intervals throughout their development to examine all sorts of factors which might protect or trigger type 1 diabetes, e.g. foods, fluids, viruses, bacteria, inflammation, genes, body composition, etc.

How often will the study visits be?

Depending on when and where you enter the ENDIA Study, families will ideally have 3 study visits during pregnancy, 2 very quick visits after the birth, then 3-monthly visits until your child turns 2; that’s 4 visits per year. Once your child is aged 2, visits will only be every 6 months; twice a year.

If you don’t live near an ENDIA hub, your can still participate in the Regional Participation Program; follow-up is less often and conducted from home.

Regional Participation Program

The Regional Program was introduced to give people living in more rural and remote areas the opportunity to contribute to this important research from the comfort of their own home.

The ENDIA Study

The ENDIA team will be investigating a number of environmental factors that we believe may contribute to the development of islet autoimmunity and type 1 diabetes in children.

Frequently Asked Questions

What is the aim of the study?
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The aim of the ENDIA Study is to identify what in the environment protects from or triggers the development of type 1 diabetes in children. If we know what causes type 1 diabetes, the next step is to prevent it from occurring in the first place.
Who can participate in ENDIA?
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Eligible family members include:
  • pregnant women with type 1 diabetes
  • men with type 1 diabetes whose partner is pregnant
  • children with type 1 diabetes whose mother is pregnant
  • babies aged 6 months or less whose mother, father, brother or sister is living with type 1 diabetes.
Why does a family member of the baby need to have type 1 diabetes to be eligible?
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Although the risk is low, offspring or siblings of people living with type 1 diabetes have a slightly higher risk of developing type 1 diabetes compared to the rest of the population.  These children are an important group to follow to try and identify signs and symptoms of islet autoimmunity and type 1 diabetes as early as possible.
What type of research study is ENDIA?
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ENDIA is an observational study. There are no medications or interventions; there are no “case” or “control” groups. Participation in ENDIA has no impact on your usual healthcare. Participation is low risk.
Are there any medications or changes to our lifestyle if our family participate in the study?
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ENDIA staff follow the baby at regular intervals from the pregnancy through to their early childhood to see what factors in the environment each child experiences. There are no interventions or medications; participation is low risk. Participation in ENDIA will not impact on your usual health care.
Do I have to do everything?
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ENDIA is a long term follow-up study. We understand that life gets busy and circumstances change. It may seem that some aspects of the study are harder than others. The ENDIA Study is flexible. We’re very willing to take any information and data that you are willing to give. The more data we can get, the better, but any data are better than none!
What benefits for me or my family?
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There are no direct benefits to participating in the ENDIA Study. However, to show our commitment to making your participation in ENDIA a positive one, we offer :
  • $20 Coles/Myer vouchers for every clinic visit attended.
  • parking vouchers or free parking for clinic visits (where possible).
  • home visits for families having trouble attending our hospital or health care clinics.
  • the option of entering our Regional Participation Program to continue involvement from home if ENDIA clinics are too far away.
  • results of tests such as your child's height and weight, vitamin D, coeliac and antibody status.
If during the study your child develops islet autoantibodies, which would increase his/her risk of type 1 diabetes, you will be counselled about this. You will be offered a meeting with your local Clinical Investigator (a specialist Endocrinologist) to discuss the implications. Your child may be invited to participate in any prevention trials that are being conducted in Australia.

Meet some of the participants

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Cadence

Cadence was diagnosed with type 1 diabetes when she was 18 years old; over 17 years ago. She came across the ENDIA Study in her role as a Senior Research Grants Officer at the University of Adelaide. Cadence was determined to continue contributing to research throughout her pregnancy and her child’s early life. Her eldest son, Edwin, has been involved in the study for four years now!

 

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The Parker Family

Evan Parker is one of many members of his extended family that live with type 1 diabetes. He’s had type 1 diabetes for 30 years. His wife Andrea, and two sons, have been participating in the ENDIA Study from Adelaide since before both boys were born. The eldest, Alexander, is over 4 years old now!

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Stanton Family

Emily, Scott and Jemima Clarke are taking part in the ENDIA study from Perth, WA. Emily has had type 1 diabetes for 22 years.

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Heidi, Jo and Imogen

Heidi was diagnosed with type 1 diabetes when she was 9 years old. She is now 36 years old, so that’s 25 years of living with type 1. But rather than dwell on this, Heidi works as a social worker with the same dedicated treating team that cared for her as a child. So Heidi lives and works with diabetes 24/7 and loves her job.

 

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Meet the Willoughby Family

Adam and Bec Willoughby live in Adelaide, SA. They have four gorgeous children: eldest son, Charlie, their twin boys, Hugo and Jack, and 12 month old baby girl, and ENDIA participant, Poppy. Charlie was diagnosed with type 1 diabetes aged 3 and a half years. Bec recently wrote a piece for Mamamia about Charlie’s diagnosis and their involvement in the ENDIA Study. We’re sharing excerpts of Bec’s story here…

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