Resources for parents and caregivers

Frequently asked questions

Why was my child invited to be part of The CIRCA DIEM KIDS Study?

Your child has been invited because they participated in the original CIRCA DIEM Trial as a baby. We are now following up children aged 5–8 years to understand how they are growing, developing and thriving during childhood.

Do we have to participate?

No. Participation is completely voluntary. Choosing not to participate will not affect your child's healthcare now or in the future.

Can we participate in only some parts of the study?

Yes. While we are keen to complete a complete picture of your child’s health and development, you can choose which assessments your child takes part in. You are able to decline your child’s involvement any part of the study without affecting participation in other study assessments.

What happens at study visits?

Most visits involve some combination of one or more of the following:

• Developmental assessments
• Health measurements
• Vision testing
• Hearing testing
• Breathing tests
• Sleep monitoring
• Questionnaires

Not every family will complete every assessment.

How long do appointments take?

The length varies depending on which assessments you choose.

Some visits may take less than an hour, while others may take several hours. We try to combine assessments where possible and schedule appointments at times that work for your family.

Can my child take breaks?

Absolutely. Children can take breaks whenever needed. We understand that every child is different and will work at a pace that is comfortable for them.

Can we participate if we live outside Perth?

We are exploring options to make participation as accessible as possible for families living in regional and interstate locations. Please contact the study team at circadiem@thekids.org.au to discuss your circumstances.

Will we receive our child's results?

Yes. We will discuss any clinically important findings with you and provide information about your child's assessments where appropriate.

What happens if you find a health or developmental concern?

If an assessment identifies a concern that may benefit from further investigation or treatment, we will discuss this with you and help arrange appropriate follow-up with your GP or a specialist service.

Are there any risks?

The CIRCA DIEM KIDS Study is an observational follow-up study, which means we are not testing a new treatment or changing your child's medical care.

Most of the assessments used in this study are routinely performed in children and are considered very low risk.

Some children may experience mild discomfort, inconvenience or tiredness from participating in study visits. For example:

• Developmental assessments may require concentration and can be tiring for some children.
• Vision assessments may involve eye drops, which can cause temporary blurred vision and sensitivity to light for a few hours.
• Lung function testing may involve Ventolin (salbutamol), which can occasionally cause temporary shakiness, a faster heartbeat or increased energy levels.
• Hearing assessments require children to wear headphones and complete listening activities, which some children may find tiring.
• Wearing the sleep and activity monitor may feel unusual at first, although most children quickly get used to it.

If you choose to participate in the optional biological sample collection:

• Blood collection may cause brief discomfort, bruising or minor bleeding at the collection site.
• Nasal swabs and cheek swabs may feel uncomfortable for a short period of time.
• Collecting saliva, urine and stool samples is generally low risk but may be inconvenient.

Some children born preterm may have sensory sensitivities or developmental differences that make unfamiliar environments, equipment or assessments more challenging. Our experienced team will work closely with families to ensure children feel safe and supported. Children can take breaks, skip parts of an assessment, or stop participating at any time.

There is also a small risk that some parents may find questionnaires or discussions about their child's health and development upsetting. If concerns are identified during the study, we will discuss them with you sensitively and help guide you toward appropriate support services if needed.

The safety and wellbeing of children and families is our highest priority. All assessments are conducted by experienced clinicians and researchers who regularly work with children and their families.

What if my child is shy, anxious or has additional needs?

Our team has extensive experience working with children born preterm and children with a wide range of developmental needs.

We encourage parents to let us know about any concerns before the appointment so we can adjust help your child feel comfortable and supported.

My child is doing really well. Why is it important that they participate?

We're delighted to hear that your child is doing well!

In fact, children who are thriving are just as important to this research as children who may have health or developmental concerns as it will help us to understand if giving premature babies a day-night pattern after birth helps them to develop better.

To truly understand the long-term effects of prematurity and the CIRCA DIEM intervention, we need to learn from the full range of experiences and outcomes. If only families whose children have difficulties participate, we won't get an accurate picture of how children born preterm are growing and developing.

By including children who are healthy, active and doing well at school, we can better understand:

• What positive outcomes look like after preterm birth
• Why some children thrive
• Whether early interventions have lasting benefits
• How best to support future families and babies born preterm

Every child's story matters. Whether your child has faced challenges or is flourishing, their participation helps us build a more complete understanding of childhood development after preterm birth and contributes valuable knowledge that may improve care for future generations of babies and families.

What happens to our information?

Your child's information is stored securely and only accessible to authorised members of the research team.

Results are reported at a group level, and individual participants are never identified in publications.

What happens to my child's samples?

Samples are stored securely using a study code rather than your child's name.

With your permission, samples may be stored in the CIRCA DIEM Biobank and used in future ethically approved research related to prematurity and child health.

Will we be reimbursed for travel or parking?

Please contact the study team for information about reimbursement arrangements available at your study site.