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

Conference Presentation

Recently the European Respiratory Society held their annual conference in Vienna.  For the very first time there was a dedicated segment on the program to discuss preterm associated lung disease.  Several researchers and clinicians presented the findings of their recent research in this area.  Our Co-founder Amber set the scene providing a Lived Experience perspective to open the session which was well received.

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