How did you find taking part in the ELSA study?

Status
Not open for further replies.
Anna DUK

Anna DUK

Online Community Team Leader
Staff member
Relationship to Diabetes
At risk of diabetes
Pronouns
She/Her
If you've taken part in the study, let us know what your experience was like.
 
I'm not eligible for the study but as somebody who has had Type 1 diabetes since I was a child I'm really concerned about the screening. Hopefully you can reassure me. How does screening for Type 1 help? Doesn't it risk causing fear when none is needed? If done at 3 years old how will it detect type 1 diabetes in someone a few months to a few years later? If it can find out a young child is at risk can anything be done to prevent the Type 1 diabetes from developing or will just cause worry when nothing can be done until it has actually developed?
I appreciate you taking time to answer these questions.
 
AJLang said:
How does screening for Type 1 help? Doesn't it risk causing fear when none is needed? If done at 3 years old how will it detect type 1 diabetes in someone a few months to a few years later? If it can find out a young child is at risk can anything be done to prevent the Type 1 diabetes from developing or will just cause worry when nothing can be done until it has actually developed?
Click to expand...
Appreciate is can be fear inducing, especially if the result is positive, however, there are several benefits to being screened for type 1 diabetes:
  • Helps the researchers find children at risk of the condition – the sooner they screen, the sooner they can intervene.
  • Allows them to follow-up children at risk so that they can start treatment sooner, before the child becomes too unwell.
  • Prevents admission to hospital with diabetic ketoacidosis
  • Enables high risk children to enter research trials testing new treatments to delay the start of type 1
The screening is particularly looking at the number of different types of autoantibodies present in the blood which indicates risk of developing type 1 diabetes. If a child (who is 3 for example) is screened and found to have one autoantibody, they have a higher risk of developing type 1 in the future than someone who has no autoantibodies. Autoantibodies can increase, stay the same or decrease over time. Therefore, it might be helpful to have the child re-tested later on to keep an eye on this. If a child has two or more autoantibodies, type 1 diabetes has started to develop. The likelihood of being diagnosed with the condition within the next 15 years is around 85% - so this gives some kind of time-frame, but also there's almost a 100% chance of a diagnosis in their lifetime.

As part of the ELSA Study, if children in the study test positive for type 1 autoantibodies, they will be invited to take part in an education session to help prepare them (and parents) for a diagnosis of type 1 diabetes. Those at risk can also be invited onto immunotherapy trials designed to slow down or stop the immune system attack. One clinical trial has found an immunotherapy drug, called teplizumab (although MHRA is still reviewing this for approval and even then needs to be made available on the NHS if this was to be rolled out UK-wide), delays a diagnosis of type 1 by three years on average when given to people at high risk of developing the condition. The children in the ELSA Study will be invited to take part in this kind of trial, as well as, other immunotherapy clinical trials.

Part of this particular section on the forum is to offer a place, to those parents whose children test positive, support and further practical guidance from parents here in our community who can share their lived experiences on having a child with type 1 diabetes, how they managed diagnoses and more related experiences.
 
I'm presuming that you will not want to keep my following comment on the forum but I think that the thought of giving children strong drugs to delay diabetes by just three years is not a good decision. I think it just gives parents of undiagnosed children yet another thing to worry about when they should be enjoying their children growing up without worry. Surely the best way to prevent children from being admitted with DKA is better education. I won't be commenting further on this but I'm certainly glad that my Mum, and my closest Type 1 friend who has three children have not had to have this kind of worry of something that may or may not happen.
 
We did it for my then 3 year old, it was fine. He came out as low risk, I guess I don't know how I would have reacted if higher risk but we figured informed was better
 
I’m T1d and my 13yo daughter has also just been diagnosed 5 weeks ago. It has devastated me but we are coping well. I have another child who is 16yo so cannot meet the criteria for this study which I’m finding a bit tough to understand. Why is screening not available for anyone over 13yo especially when there is now two of us genetically linked and both have t1d?
 
Daisynova said:
I’m T1d and my 13yo daughter has also just been diagnosed 5 weeks ago. It has devastated me but we are coping well. I have another child who is 16yo so cannot meet the criteria for this study which I’m finding a bit tough to understand. Why is screening not available for anyone over 13yo especially when there is now two of us genetically linked and both have t1d?
Click to expand...
The ELSA Study specifically recruits children up to the age of 13 years old because the autoantibodies typically appear in childhood, even in people who don't get diagnosed with type 1 diabetes until they're adults. However, anyone aged 1-45 years old who has a sibling, parent or child with type 1 diabetes can sign up to INNODIA: https://www.innodia.eu/increasedrisk/ which is screening for people with an increased risk of T1D.
 
Anna DUK said:
The ELSA Study specifically recruits children up to the age of 13 years old because the autoantibodies typically appear in childhood, even in people who don't get diagnosed with type 1 diabetes until they're adults. However, anyone aged 1-45 years old who has a sibling, parent or child with type 1 diabetes can sign up to INNODIA: https://www.innodia.eu/increasedrisk/ which is screening for people with an increased risk of T1D.
Click to expand...
Thanks for sharing the link.

Considering this is for people at higher risk of T1 you think the website would be more accessible. This is a horrible font! Screenshot 2024-05-22 093008.png
 
Status
Not open for further replies.
Back
Top