FROG study – Focused consumer Research priorities to improve Outcomes and Guide care for neonates with surgical conditions

Are you a parent or carer of a child who had major surgery as a newborn (within 1 month of birth), or a person with lived experience with major surgery as a newborn?

Please help us with a short survey. The survey is only open for people living in Australia and will be available until 16th September 2025. Previous work by our team has already identified a longlist of research ideas; now we need your help to select the ones that are the most important so that we can focus our research efforts on those.

The survey takes only 3-5 minutes to complete and is anonymous.

Parents, carers, and people with lived experience, please use this link to access our FROG study:

https://redcap.link/FROGConsumerPrioritisation

This will help us to ensure that our research is meaningful and acceptable to all our patients, their families, and clinicians alike. Let us work together to improve the lives of some of our most vulnerable children to give everyone the best chance to have a happy and healthy life.

FROG study – Focused consumer Research priorities to improve Outcomes and Guide care for neonates with surgical conditions

Fantastic resources for families

We’ve been working with our friends at The Kids to bring these fantastic resources to life. Designed to put critical information about lung health into the hands of parents of children born prematurely, or adults who were born preterm themselves. There are two great fact sheets along with a helpful worksheet to note down important information you can take along to any appointments with health care professionals. Resources are free and available to check out on The Kids website.

STAMP RSV Study

Researchers from The Kids Research Institute Australia are hoping to learn more about how respiratory syncytial virus, or RSV, affects your family.

They are wanting to speak with parents/carers of young children at a higher risk for RSV infections. Researchers will ask how RSV affects your family, and what information is important to you when learning about RSV immunisations.

Researchers would love to hear from you if you have a child aged under 2 years who:

·                     was born very pre-term (32 weeks or earlier), and/or

·                     has a heart or lung condition, and/or

·                     has a chromosomal abnormality

How do I get involved?

If you’re keen to get involved, please click on the following link for more information, and to sign up to the study: https://redcap.link/iwyyb1dw