MCRI Research Connection

It was so lovely to be invited to the Murdoch Children's Research Institute (MCRI) Preterm Research Connection to participate on the parent panel.  The researchers in attendance all have a strong commitment to embedding the Lived Experience into their work.

It was fascinating to hear about the differences observed in adults who were born preterm and also hugely reassuring to hear of the similarities to their term born peers.  The preterm born adults who shared their personal insights were remarkable and left many audience members with goosebumps.

Some researchers presented on the gaps within the system that continue to persist and highlighted why continued research and innovation is so important.  We've been collaborating on several projects including the Guideline for Growth, Health and Development Follow-up for Children Born Very Preterm, which has now been published and endorsed by National Health and Medical Research Council and another relating to a Model of Care for follow-up.  These pieces of work are great places to start, but they are not end points and require expansion, implementation, consideration of health equity across the Nation and more.

We look forward to continuing our relationship and working to solve some of these pressing issues.

Research on Exercise Interventions

People born preterm may exercise less, and at a lower intensity, than their term-born peers. They are also at risk of developing lung problems in later life. Exercise training can improve fitness and reduce symptoms caused by lung problems.

We are seeking adolescents and young adults (ages 12 to 35 years) who were born preterm, and parents of children (all ages) born preterm, to complete a brief (5 minute) online survey to understand the perceived need for an exercise training intervention for young people born preterm (Project ID: #45103).

The survey is anonymous and responses confidential. We are interested in all opinions, whether you (or your child) exercise a lot, a little or not at all! 

You can complete the brief survey by clicking on the following link:
https://monash.az1.qualtrics.com/jfe/form/SV_7a1SsytE0491uAK

Quality of Kids’ Lives Study

Are you the parent, carer or guardian of a child or young person aged 2-18 years old?

We need your help to take part in an important study the Murdoch Children’s Research Institute is conducting about measuring the health and wellbeing of children and young people. Findings will be used to evaluate new treatments for kids. Taking part will involve completing two surveys.

Interested in participating or want to know more?

Visit https://redcap.mcri.edu.au/surveys/?s=X87R9Y84HF&prem=1

Every Week Counts - National Preterm Birth Prevention Collaborative

Co-founder Amber was in Melbourne this week to attend the first Expert Panel meeting of the National Preterm Birth Prevention Collaborative. Bringing together clinicians, researchers and consumers from all over Australia the group has a common goal. To lower the rate of preterm birth nationally to ensure better outcomes for children and families.

Professor John Newnham AM who is Chair of the Australian Preterm Birth Prevention Alliance together with Amber set the scene for the day. The impact preterm birth has on families, the developmental impact on the child, the economic cost of preterm birth not just in the Neonatal period but throughout childhood, what can be done and how we are going to work together to create change.

The Alliance has recently launched a new Facebook page and Twitter account and would appreciate you following along. You can find them on Facebook here: https://www.facebook.com/PretermAlliance/ their Twitter handle is @PretermAlliance

More about the Australian Preterm Birth Prevention Alliance ~ “The Every Week Counts: National Preterm Birth Prevention Collaborative is a two-year initiative aiming to safely lower the rate of preterm and early term birth within participating maternity units from across Australia and leave an enduring culture of better practice.

The joint collaboration between the Australian Preterm Birth Prevention Alliance, Women’s Healthcare Australasia (WHA), the Institute for Healthcare Improvement (IHI), and Safer Care Victoria, will use methods that have been successfully employed by hospitals around the globe for over 25 years.

Chair of the Australian Preterm Birth Prevention Alliance, Professor John Newnham AM, pointed to the Collaborative as being a truly national force aiming to strategically lower the rate of preterm birth.

“The National Collaborative aims to safely reduce preterm and early term birth across Australia by 20% through supporting hospitals in the adoption of evidence-based changes in clinical care,” Professor Newnham said.

“The evidence-based changes were first developed in 2014 by the Alliance, and have since been successful in reducing rates of preterm birth in Western Australia, Tasmania, and the Australian Capital Territory.

“Australia is now the world’s first to show that the rate of preterm birth can be safely reduced at a population level.”

WHA Chief Executive Officer, Dr Barbara Vernon, said that more than 30 hospitals across Australia would be involved in the National Collaborative.

“Australia has pockets of excellence for safely reducing early birth, however wide scale adoption across all health services has yet to occur,” Dr Vernon said.

“This model is designed to do just this and help organisations close the gap between what we know, what we do, and ultimately, prevent preterm birth and it’s far reaching impacts.”

During the Collaborative, participating hospital teams will be supported to accelerate their learning and develop reliable systems to ensure all women are offered the care and public health information that is known to reduce early birth. Teams will also be able to share their learnings with each other across Australia.”