Australian Living Guidelines for the Management of Respiratory Distress Syndrome (RDS)

YOUR VOICE IS NEEDED! 

Australian Living Guidelines for the Management of Respiratory Distress Syndrome (RDS)

RDS is a breathing condition affecting many babies born prematurely because their lungs are not fully developed. These new Australian Guidelines will bring together the best evidence to support doctors and nurses caring for babies with RDS across the country with the goal of improving outcomes and ensuring more consistent, high-quality care that meets the needs of both babies and their families.

Parents, carers, adults born prematurely and people with diverse community perspectives will join health professionals and researchers on the Guideline Development Group (GDG). Your perspective is essential to making sure these Guidelines work in the real world and truly meet the needs of families.

What’s involved:

• Participating in virtual meetings (eight meetings over 2026–2027, each up to 2 hours)

• Reviewing documents and providing feedback between meetings

• Sharing your experience to help shape guideline recommendations and how they’re put into practice

*Important: Community members on the GDG will be reimbursed for their time and expertise.

More information is available in the Expression of Interest Form.

 

Living with disability or life limiting condition?

Are you parenting a 5-18 year old? Does your child have experience living with a disability or life-limiting condition?

You may be eligible to participate in our research study.

 

What is the research about? We would like to speak to a range of people who are parenting and their adolescents about their thoughts on a general health questionnaire. The questionnaire might be used in research or clinical health settings and asks children (or their parents) to report on general difficulties with their: ‘mobility’; ‘looking after myself’; ‘doing usual activities’; ‘pain/discomfort’; and ‘feeling worried, sad or unhappy’. We are interested in ways we might improve this questionnaire to better meet the needs of children and young people who are living with life-limiting conditions or disability. The interviews would go for 45 minutes to 1 hour. You will be reimbursed for your time.

 

How to get started? Simply scan the QR code on the flyer to complete a short survey to express interest in participating in the study. We will only be selecting a small number of participants, and we aim to reach people with a range of different experiences. We may not contact everyone who completes the expression of interest survey.

Meet PELICAN: A Global Network Interested In Lung Health After Preterm Birth

If you or your child were born prematurely, you might have heard about long-term health outcomes. One area that researchers around the world are focusing on is lung health. That's where PELICAN comes in.

PELICAN stands for Prematurity's Effects on the Lungs in Children and Adults Network. It was launched by the European Respiratory Society in 2020. PELICAN is a research collaboration bringing together clinicians, researchers and families from 33 countries around the world to pool data and answer some big questions about lung health for people born preterm. One of the Co-chairs Shannon Simpson is based at The Kids in Perth, Western Australia and our own Chairperson here at Tiny Sparks, Amber Bates is the lead Consumer on the Scientific Steering Committee.

The good news is that recent medical advances mean more babies born early are surviving than ever before. It’s time we move on from focusing in on survival and help these people thrive throughout life.  Some people born preterm will face life long lung health challenges. Researchers now use the term Prematurity Associated Lung Disease (PLD) to describe the lung health challenges that people experience following preterm birth. PELICAN's mission is to understand these challenges better and improve lifelong lung health for all people born prematurely.

PELICAN is building a global research network and data repository to help researchers understand how preterm birth affects lung health across a lifetime. They're collecting information from children and adults born prematurely, looking at lung function, respiratory health, and how different treatments and life experiences, especially those in the NICU and early life, affect lung outcomes. What makes PELICAN special is that it's creating a shared language and standardised measures for research. This means scientists from different countries can compare findings and work together more effectively to answer important questions about lung health after preterm birth.

If your child was born prematurely, PELICAN's research could offer valuable insights into what to expect, how to support their lung health, and what treatments or interventions work best. By connecting families with researchers and clinicians globally, PELICAN helps create better outcomes for children born too soon.

PELICAN has recently launched an Instagram page @pelican.network to help them directly connect with community members about important information. To share resources, stories and learnings and help you unpack the science in an easy to understand way.

Calling young adults born preterm

Can you help to design a new type of exercise program for adults born pre-term?

Adults born pre-term have identified a need for supported exercise programs. Researchers from Monash University (project approval ID 49973) are now looking for young adults (18-40 years), who were born pre-term, to tell them what they think the ideal exercise rehabilitation program would look like.

What's involved? - An online focus group discussion via Zoom with 3-6 other people (approx. 1 hour). Participants will be reimbursed for their time ($40/hour in the form of a gift card). Please see the advert for further details.

If this sounds like something you'd like to be a part of or you’d like more information, please contact Rebecca Cousins at rebecca.cousins@monash.edu, or, follow this link to share your contact details and we will get in touch with you: https://forms.gle/NL92CvQ2rjYUgksy8