Current Research Projects
SUPPORT
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:
- https://impact.psanz.com.au/clinical-trials/clinical-trials-2/
- https://ctc.usyd.edu.au/our-work/research-divisions/neonatal-and-perinatal/
Listed below are the active research projects and trials that have been designed with input and active involvement of our Miracle Babies Consumer Representatives.
Join our NurtureNetwork to be notified of new research surveys, updates and opportunities
If you are a researcher, click here to submit a survey and here to request a consumer rep on your project.
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Lungs for Life
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.
HUM-TE Trial
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The HUM-TE trial is a world-first study comparing initial incubator HUMidity at Two levels (80% versus 95%) in Extremely preterm babies.
One in four Australian babies born more than 3 months early do not survive. Three quarters of those who do survive have serious problems with development.
Extremely preterm babies lose a lot of water through their immature skin. This can cause severe dehydration, reduce survival, and increase brain damage. Dehydration can be prevented by increasing the humidity in the incubator. But no one knows the best level of humidity to use.
This project aims to answer that question and is supported by the Medical Research Future Fund of Australia.
Further information about the trial is available here.
Neonatal Pulmonary Hypertension
Was your baby diagnosed with pulmonary hypertension?
Could you help the research team at Liverpool Womens NHS Foundation Trust and Liverpool University, UK to determine what are the important outcomes to study in babies?
They are looking for:
Parents of babies diagnosed with high pressure in their lungs, pulmonary hypertension, at any point whilst under neonatal care.
Your views are extremely important
To ensure that future studies looking at treatments for pulmonary hypertension in babies include outcomes that are acceptable to families.
What is involved?
A single online interview with a member of the study team, lasting approximately 30 to 45 minutes.
Prenatal Diagnosis - Parent Focus Group
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.
SurePre
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.
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