Updated: Nov 12, 2020
WA mum, dietitian and diabetes educator Lauren Cotter has type 1 diabetes. A keen supporter of research into the condition, Lauren has enrolled her 7-year-old son Josh into Type1Screen  and her 6-year-old daughter Maddie into the ENDIA Study  which are designed to understand the origins and early markers of type 1 diabetes.
I’ve had type 1 diabetes for 28 years. There is a strong history of type 1 diabetes in my family: my mum, mum’s sister and cousins on both mum and dad’s side all have it. I’m aware this potentially puts my children at a higher risk of developing the condition.
Enrolling my kids in ENDIA and Type1screen felt like a good thing to do as a health professional as well as someone living with the condition. I have experienced how type 1 diabetes, and other chronic conditions, impact on individuals and their families.
We’ve explained it to the children along the lines of: “You know how Mummy has to have injections and test her BSLs every day to stay healthy? This blood test you are having is to help people like me understand why that happens.” We kind of went from the angle of altruism and helping others.
We’re happy to further knowledge about type 1 diabetes and do something to help prevent this condition for others in the future.
We see benefit in tracking the kids’ immune status for peace of mind; to know if they are, or are not, at risk of developing type 1 diabetes. Type1Screen sent us an email recently notifying us that Josh had negative results. This was a real relief for us. He doesn’t need to be tested again for another 5 years. Josh was pleased with that too!!
I’ve learned more by enrolling in this research through having conversations with the ENDIA and Type1Screen nurses who talked us through the patient information and consent forms and what it all means. Although the presence of autoantibodies doesn’t mean the children have diabetes, consecutive positive results do indicate a higher risk for disease progression.
Generally our experiences with both programs, ENDIA and Type1Screen, have been all good. The research nurses are fabulous with the kids. They’ve never pushed them to do anything they don’t want to do and been really lovely distracting them with bubbles and other strategies. As much as they can, the visits are really fun. It’s been quite a positive experience for the kids also. Our 6-year-old daughter is a bit of a star. She walks in ready for the blood test, and says “take my blood”. As soon as we get there she’s in the right state of mind. She knows it doesn’t hurt. My son gets a bit worried and worked up about it. The nurses are great with him. Aside from the anxiety, the rest of our participation has been fabulous.
Type1Screen is a one-off visit for a blood test and takes no time at all. However, if results did come back positive for islet autoantibodies (the early markers of type 1 diabetes), we’d be offered another test to confirm the result. Two consecutive positive results are now seen to be “stage one” of the development of type 1 diabetes. We were made aware that if this occurred, we’d be invited to visit the diabetes centre for education about the signs of clinical diabetes as well as offered enrolment into a TrialNet prevention study; current clinical trials are outlined on the TrialNet website.
Recent results published about the Teplizumab Prevention Study showed a delay in the onset of clinical type 1 diabetes for a median of two years in children and adults at high risk. That is a significant amount of time to live without type 1 diabetes, and very promising for the future.
We think it’s really important to be part of these studies to contribute to the next steps in diabetes research and treatment. We feel our involvement to try to prevent type 1 diabetes is worth it.
 Type1Screen is a free national program offering risk screening to 2 – 30 year olds who have ANY family history of type 1 diabetes. Any child or young person found to be positive (the early markers for type 1 diabetes) will be offered support through a network of diabetes centres and clinicians as well as participation in prevention studies aiming to delay the onset of the condition. For more information go to their website, Facebook page, or email the team directly at firstname.lastname@example.org.  The ENDIA Study is a pregnancy cohort study looking into the causes of type 1 diabetes. Recruitment has officially closed as 1500 participants were enrolled by the end of last year. Every baby has now been born. These children are followed every 3-6 months by a research nurse to collect information and samples such as blood, urine, stool and swabs in the search for the triggers or protective factors which may be implicated in the development of type 1 diabetes. More information here, on Facebook, or email the team at email@example.com.
With thanks to Kelly McGorm, Engagement Coordinator for Type 1 Screen and ENDIA