About the study
In ELSA-1 we will be conducting interviews with families and co-production workshops with parents to help us determine if a testing and monitoring programme for type-1 diabetes is acceptable for children and their families. We will use use our findings from ELSA-1 to help us design the ELSA-2 Study.
What is the ELSA-1 study?
In this study, we want to understand whether you would or would not want to know if your child was at risk of getting type 1 diabetes in the future and if you would consider your child being part of a monitoring programme.
We simply want to hear your thoughts and explore the reasons behind your thinking. There is no right or wrong answer and it is okay if you are not sure.
Why are we doing the ELSA-1 study?
Your interviews with our research team will help us determine if a testing and monitoring programme for type 1 diabetes is widely acceptable for children and their families.
We want to understand any ethical issues or concerns that parents, carers or their children have and aim to address these and reduce the burden.
We will not be testing your child for diabetes in the ELSA-1 study but ELSA-1 will lead onto and inform the design of the ELSA-2 study.
What is the ELSA-2 study?
The ELSA-2 study will trial a type 1 diabetes testing and monitoring programme for children living in the West Midlands region in the UK.
The test for type 1 diabetes starts with a simple finger prick blood test. If this is positive, the next stage is to have a venous blood draw. If this is also positive, this means your child is at high risk of developing type 1 diabetes in the future. Families will then receive education to know the signs and what to expect with type 1 diabetes. Children at high risk will also be entered into a monitoring programme to provide regular check-ups.
Why is the ELSA study important?
By finding children who are at high risk of getting type 1 diabetes in the future, we can monitor these children more closely to stop them getting too sick. Also, finding those at risk means these children could choose to go into research studies testing new treatments to delay the start of type 1 diabetes.
This research will help us work towards childhood screening programmes for type 1 diabetes.
Co-design and Co-production workshops for parents:
Parents will be invited to attend co-design and co-production workshops where you will have the opportunity to discuss openly about the barriers to testing and monitoring children for type 1 diabetes.
This will help the study team to understand, address and alleviate these barriers. We also want to hear from you how we could optimise a testing and monitoring programme for type 1 diabetes in children. This group interview is optional.
Co-design and Co-production workshops for stakeholders:
We will also be holding co-design and co-production workshops with key diabetes stakeholders, including GP’s, diabetes multidisciplinary teams, community pharmacists, school nurses, and many more, to understand their views on a diabetes testing and monitoring programme.
This will help us to further understand how to optimise a testing and monitoring programme for type 1 diabetes in children.