The ELSA Study

In the EarLy Surveillance for Autoimmune diabetes (ELSA) study, we are interviewing families such as yours to understand whether you would want to know if your child was at risk of getting type 1 diabetes in the future.

The aim of the ELSA-1 Study is to understand families thoughts about knowing a child is at risk of type 1 diabetes in the future. This study does not involve testing your child. We’re simply asking families what they think.

Diabetes is a serious, lifelong condition. There are two main types of diabetes. Type 2 diabetes is caused by a combination of genetic and lifestyle factors and is less common in children. Type 1 diabetes is more common in children and is caused by the bodies own immune system destroying the pancreas, an organ in the body that produces insulin. Insulin is a natural hormone needed by your body to convert glucose into energy, needed for every day life.

Children who develop type 1 diabetes can be come extremely unwell and need to take insulin straight away and continue for the rest of their lives. If diabetes is not managed properly, it can lead to increased health risks. Research studies around the world are identifying young people at risk of developing type 1 diabetes and are looking into treatment that might delay the start.

We understand it may be very distressing for a family to receive this life changing information. You are invited to take part in the ELSA-1 Study to help us understand how to support families better in this situation. To do this, we’re carrying out surveys across the West Midlands with parents and their children, aged between 3 to 13 years. Children can take part, whether or not they have been diagnosed with type 1 diabetes. The interviews will be done virtually from your own home, using video calling, or a simple phone call. They’ll be arranged a convenient time for you and last less than one hour. Our researchers will ask questions to explore how you would feel if you were told that your child was at risk of diabetes in the future. We simple want to hear your opinions.

The audio from the interviews will be recorded and stored anonymously. Taking part is entirely voluntary and you can stop at any time.

The findings from ELSA-1 will help us design ELSA-2, which is the type-1 diabetes testing and monitoring program.

If you would like any more information, please talk to a member of the study team.

Participant Information Animation

This animation provides a summary of the ELSA-1 study. For more information click the Full Parents’ Information or Children’s Information buttons below.

Parents’ Information

Children’s Information

Download information sheets

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Aim of the study

ELSA is a two part study. ELSA-1 will evaluate and explore families thoughts about a type 1 diabetes testing and monitoring programme. ELSA-1 will inform the design of ELSA-2. ELSA-2 will trial a type 1 diabetes monitoring programme for children aged 3-13 years.

ELSA-1: Evaluation

We are carrying out interviews across the West Midlands, with parents and their children aged 3-13 years.
ELSA-1: Co-design and Co-production

We are inviting parents and stakeholders to attend collaborative co-design and co-production workshops to identify and address barriers to testing and monitoring for type 1 diabetes in children.
ELSA-2: Testing and monitoring

ELSA-2 will open in 2022 and is for children aged 3-13 years who have not been previously diagnosed with type 1 diabetes. Coming soon!