Why participate in type 1 diabetes research?
Mother of two, Lauren Cotter, discusses her experiences of participating in two Australian studies into type 1 diabetes and why she said “yes” to Type1Screen.
WA Mum, Lauren Cotter, has type 1 diabetes. She is an advocate and supporter of research into the condition by enrolling her 7 year old son into Type1Screen and her 6 year old daughter with the ENDIA Study. They participate by attending the Telethon Kids Institute in Nedlands, WA. Both studies are funded in part by JDRF.
Briefly, Type1Screen is a free national program offering risk screening to individuals aged 2 – 30 years who have ANY family history of type 1 diabetes. For more information go to their website: www.type1screen.org, Facebook page: www.facebook.com/type1screen or email the team directly at type1screen@mh.org.au.
The ENDIA Study has officially closed recruitment as 1500 pregnancies and new babies have been enrolled. The last baby is due to be born on the 1st August 2020. These children have regular visits with a research nurse to collect information and samples such as blood, urine, stool and swabs in the search for the causes of type 1 diabetes. More information at www.endia.org.au, Facebook: www.facebook.com/endiastudy or by emailing the team at endia@adelaide.edu.au.
We were lucky enough to chat with Lauren recently about her experiences of participating in both of these type 1 diabetes studies with her daughter, Maddie (ENDIA) and son Josh (Type1Screen).
- Why did you enrol in these studies?
I’ve had type 1 diabetes for 28 years. There is a strong history of T1D in my family; my mum, mum’s sister and cousins on both mum and dad’s side. I’m aware that this potentially puts my children at a higher risk of developing the condition. It was my Endocrinologist who told me about these studies at one of my appointments. I was pregnant with Maddie and Josh was only 18 months old. I felt it was a good thing to do as a health professional myself, as well as having a personal interest in research. I thought it would be great to get involved in these research programs to help:
a) uncover some more information about the environmental determinants of type 1 diabetes and
b) track my kids’ immune status for peace of mind; to know if they are, or are not, at risk of developing type 1 diabetes.
- What decision making did you have to go through before enrolling (i.e. discussions with your partner or other family members)?
My husband is fantastic; he’s very supportive of me and my diabetes and understands the importance of the overall health of our family. He was as keen as me to help research and track the kids. So when the invitation was given to participate we both just said “yes” and wanted to do that. Our eldest, Josh, was 18 months old when we first got him screened through TrialNet. He was far too young to explain as to why he was involved in this study. Now aged 7 years old, we enrolled him in the Australian equivalent, Type1Screen. We tried to explain it to him at his recent appointment. Something 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. He wasn’t keen on the idea of a needle, but we got there in the end. At his Type1Screen visit, we gave him lots of praise as well as took him to play at the park; a treat so it felt like a special thing for him.
- What are your thoughts about screening and the risk of developing type 1 diabetes for your children?
I am a CDE (Clinical Diabetes Educator) and Dietitian, so I have a reasonable understanding of the concept of autoantibodies (early markers of type 1 diabetes). This was further supported by having conversations with the ENDIA and Type1Screen nurses (Alex and Alison at the Perth Children’s Hospital) who talked us through the patient information and consent forms (PICF) and what it all meant. We talked about the autoantibodies and other things to be tested from the blood sample. Although the presence of autoantibodies doesn’t mean the children have diabetes, consecutive positive results do indicate a higher risk for disease progression. I not only have personal experience of type 1 diabetes, but as a CDE, I have experienced the impact type 1 diabetes, and other chronic conditions, have on individuals and their families. We’re happy to contribute to anything we can do to prevent this for others in the future.
We were also interested to hear from Type1Screen about the interventions being trialled at the moment such as the Hydroxychloroquine trial (a drug that has been used to treat malaria, and now trialled for the Coronavirus?!) The nurses are always happy to answer any questions that arise.
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!! If he did turn out to be positive, we were assured that he would be followed up by a Paediatric Endocrinologist in Perth. It’s great we won’t need that service!
- What good, bad, or general experiences have you had participating in these type 1 diabetes research programs?
Generally, our experiences with both programs, ENDIA and Type1Screen, has been all good. Alex and Alison 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 y.o. daughter is a bit of a star. She walks in ready for the blood test: “Take my blood” she says. As soon as we get there she’s in the right state of mind. She knows it doesn’t hurt. My son is quite clever and over thinks things. He gets a bit worried and worked up about it. We live in the country about an hour from Perth. When our ENDIAN, Maddie, was little we travelled to the hospital every 3 months. Sometimes the coordinators would come to me which really helped a lot. We would try and tie it in with other commitments to make the whole visit worthwhile. But other than this traveling and the anxiety, the rest of our participation has been fabulous.
In the main, Type1Screen is a one off visit and no time at all. It is worth it for that peace of mind. Obviously if Josh’s results were positive, we would be asked back to discuss the results and undergo further testing and assessment for any available preventative trials. We think it’s really important to be part of these studies and to have this screening to contribute to the next steps in diabetes research and treatment.
- What do you hope to get out of participation?
Really, the main motivation was to get the screening done for my own kids and the knowledge about their autoantibody status. If it was positive, we would have been keen to receive advice and support about what the next steps might be. If either were found to be positive, which happily neither are to date, we’d want the opportunity to try and prevent or delay further progression to clinical diabetes. With our family history, the risk for our children is higher. I see it in my work how it affects people on a day to day basis. Chronic conditions generally impact on the individual and the family. Our involvement to try to prevent type 1 diabetes is worth it.
- What support is offered if you find out your child has the early markers of type 1 diabetes?
Luckily for us so far, our children have screened negative for islet autoantibodies. If they were found to be positive, my understanding is that another test would be offered to confirm the positive finding. With two consecutive positive blood tests, this is seen to be “stage one” of developing type one, so we would be put in touch with the local participating diabetes centre for education and support.
- What intervention occurs to prolong stage 2?
The offer is there to visit the diabetes centre for education about the signs of clinical diabetes. And it would be at this time that families would be offered enrolment into a TrialNet prevention study. There are currently two clinical trials which are outlined on the TrialNet website.
Recent results were published about the Teplizumab Prevention Study to show that the onset of clinical type 1 diabetes could be delayed 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.