EPIC: Guideline working group EOI

The Extremely Preterm Infant Centre of Research Excellence (EPIC-CRE) led by Professor Jeanie Cheong at the MCRI is developing a national Guideline for Growth, Health, and Developmental Follow-up for Children Born Very Preterm from School Age to Adulthood. 

The guideline aims to improve the quality of life and optimise health trajectories across the life course for children born very preterm, from school age to adulthood, supporting their increased risk of chronic and complex physical and mental health conditions and promoting consistent, coordinated care.

We are seeking individuals with lived experienced to join Guideline Development Group (GDG) to ensure the guideline is practical and relevant. The GDG will include diverse group from across Australia including clinical experts, researchers, people with lived experience, and representatives from Aboriginal and Torres Strait Islander communities, CALD populations, and rural and remote regions. 

GDG meetings will be held virtually every 3 months (around 8 sessions) from early 2026 to late 2027. Each meeting will run approx. 2 hours, with 1-2 hours of document review between meetings. 

This work builds on the NHMRC-endorsed 2024 Guideline for Growth, Health and Developmental Follow-up for Children Born Very Preterm, developed by the Centre of Research Excellence in Newborn Medicine, providing recommendations from birth to preschool age. Available at CRE in Newborn Medicine.

We invite individuals born very preterm (18+ years) and caregivers of individuals born very preterm (school age or older) to join the GDG. You can express your interest by completing this short survey: https://redcap.link/zaz118h0 

Christmas 2025

Each year we strive to provide special gifts for families who will spend their Christmas in a Neonatal unit in Western Australia. This year our gifts consisted of gorgeous quilted Christmas Stockings made and donated by our wonderful Crafty Creator Collective, Baby’s First Christmas ornament with special thanks to Laser Artistry, a Christmas milestone card, beanie, pen and free 12 month membership to the Baby Play Academy thanks to the incredible Nicole Pates at Western Kids Health.

We spent our first Christmas in the Neonatal Intensive Care Unit at King Edward Memorial Hospital in Perth and it was such a tough time. Being split between siblings at home and our little one in the hospital was so very challenging. We’ve heard time and time again how special, seen and understood families feel when they receive a gift from us to mark a special occasion.

This Christmas we were truly delighted to pass the 10,000 special occasion gift mark and that’s all that to you and other members of our amazing community.

Strong Starts for Tiny Sparks: Language Begins at Birth- Simple Ways to Read and Connect with Your Little One

Language Begins at Birth: Simple Ways to Read and Connect with Your Little One

This free webinar in the Strong Starts for Tiny Sparks series will help you discover how reading with your baby or toddler builds language skills and deepens connection from the very beginning. This short, practical session is perfect for parents and caregivers looking to make book sharing fun, easy, and meaningful.

What you'll learn:

📚 How book sharing can be fun and a rich learning experience

💡 Ideas and strategies to try during reading time

🧸 What book sharing looks like at different ages

🤔 Tips if your little one isn’t into books yet

📖 Book recommendations to get you started

Please join us for this insightful webinar presented by Kathryn Morrison, Speech Pathologist with the Western Kids Health Team on:

📆 Wednesday, 24 September

⏰ 11am

Registration is essential.

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

Every Week Counts

Many of you already understand the importance of Every Week Counting in your pregnancy, but not everyone who is pregnant does. Be a change maker by sharing this important resource, the Every Week Counts magazine, with your friends, family and wider network.

Raising awareness of the critical issue of premature and early term birth is essential. Together we can drive real change!