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.
If you are a researcher, click here to submit a survey and here to request a consumer rep on your project
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