As the parent or carer of a NICU baby, it can be difficult to watch the process and amount of care that is required for the best outcome for your baby.
You may also, though, be feeling some relief and gratitude for the medical technology and highly skilled staff working for your baby’s survival and ongoing development.
For this to exist, there is an underlying understanding that the care our families receive today is available as a result of others before them taking part in research. And that those who participate in research contribute to improvements in standards of care and long-term quality of life.
Research happens in NICUs across Australia and around the world and you and your baby may be invited to participate in one or more trials.
Every trial that takes place within Australian NICUs has gone through very strict protocols and guidelines, has had input by NICU parents and has undergone independent ethics approvals.
Some of the trials currently recruiting within Australian NICUs can be found at:
Listed below are the active research projects and trials that have been designed with input and active involvement of our Miracle Babies Consumer Representatives.
James Cook University is working with Through the Unexpected on co-producing training resources about the experience of receiving a prenatal diagnosis of a fetal anomaly.
This study is being undertaken to inform training about the psychosocial aspects of prenatal diagnosis - what parents go through when they find out their unborn baby has a difference in their health, genetics or development. The training will be the first national multidisciplinary training in this space and we wish to co-produce resources with parents with lived experience.
Researchers are seeking parents who received a prenatal diagnosis of a fetal anomaly or variation to help produce training resources for health and allied health professionals. Parents can join in a small group session as a Participant or can join the research team as a Participant Researcher and be even more involved. Reimbursement of expenses is available, and parents will be paid for their participation.
The Vaccine Trials Group from Telethon Kids Institute is currently looking for participants to enrol in a clinical trial which looks at protecting premature infants against Respiratory Syncytial Virus (RSV) infections.
The study will compare the current available medication (palivizumab) against a new medication (MK-1654).
Babies who potentially might fulfill our study criteria include: (a) born prematurely; (b) born after 14 Nov 2022; and (c) has congenital heart disease or chronic lung disease. They would also have to be below 6.5 kg and not hospitalised.
Phase 3 clinical trial comparing palivizumab and MK-1654 (investigational product) in
- preventing severe RSV infections
- safety profile
Interested parties may contact the team at 0400 450 240 or email [email protected] for more information.
Currently, monitoring and responding to the oxygen needs of babies with Chronic Lung disease after they go home is difficult because oximeters are costly and cannot transmit data to clinicians for timely treatment.
The lungs for life study aims to use state of the art wearable oximetry to see if strict control of oxygen levels by parents when a baby with Chronic Lung Disease goes home, improves the baby’s outcomes including lower risk of illnesses from respiratory problems.
The study will also use telehealth and artificial intelligence to predict and manage illness, so that families can seek medical attention faster, no matter where they live.
The study is supported by the Medical Research Future Fund of Australia.
Preterm birth is a leading cause for developmental delay, with the majority of children born very preterm experiencing developmental delay and subsequent developmental disability. This project aims to significantly reduce the burden associated with developmental delay in children born very preterm by firstly developing predictive models for identifying high-risk infants in early childhood (Work Package 1), and secondly, design, implement and assess a pragmatic and sustainable surveillance service that is appropriate across Australia (Work Package 2).
To achieve this, we will:
1) use large-scale data modelling from international consortiums to identify the biological, medical and socio-environmental risk factors for developmental delay and disability in this high-risk population,
2) utilise machine learning to develop predictive models for specific developmental disabilities,
3) co-design a targeted surveillance program with key stakeholders that incorporates predictive modelling to classified level (low, moderate, high) and nature of risk (motor, cognitive, language, educational, emotional-behavioural), and
4) implement and evaluate the surveillance program that provides targeted monitoring based on the child’s level of risk.
Chronic Kidney Disease (CKD) is a devastating illness that affects more than 740 million people globally. In Australia alone, one in every 1,400 people requires regular dialysis or a kidney transplant to live. Recent research has shown that babies born preterm have a 3 to 5-fold increased risk of developing CKD. This is due to compromised kidney development particularly relating to reduced nephron growth (kidney filtering membranes). Now a team of Australian and Israeli researchers think they have found a pathway to significantly improve nephron development and thereby prevent or delay the onset of CKD in babies born prematurely.
The purpose of this webinar is to increase public awareness about the link between prematurity and CKD and highlight the need for the long-term monitoring of preterm infants’ kidney health. In this webinar, our expert panel will discuss the risk factors and symptoms of CKD, the physical impact of living with the disease and ways to mitigate the risk of developing CKD – particularly for those born prematurely.
Nephrologists and researchers