Active Research Surveys


Are you the parent or carer of a miracle baby? Listed below are active research surveys that need your voice!

Research happens in NICUs across Australia, and around the world. 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.

Your experience, story and journey with your miracle baby or babies is valued. By completing any of the surveys below, you are assisting researchers on the joint mission of advancing health and outcomes for babies born early or sick.

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If you are a researcher, click here to submit a survey

Active Research Surveys:

Humidity in extremely premature infants - clinical trial consumer survey
In 2020, about 800 Australian babies were born before 27 weeks gestation - more than 13 weeks early. Around 75% of these babies survived and some will face serious complications in the first few months of life and throughout childhood. Survival in these infants was 10% higher in Japan, which has the highest rates of survival without complications in the world.

Extremely preterm babies lose water through their immature skin. This causes dehydration and high blood sodium concentrations (hypernatraemia), which has been linked with lower survival, brain damage, and disability in childhood.

Water loss through the skin can be improved by increasing incubator humidity. But there is worldwide variation in practice due to lack of clinical trials.

Doctors and nurses in Japan routinely use 95% incubator humidity compared to 80% in Australia.


Parental experience of their baby having Inguinal Hernia Surgery

Inguinal hernia surgery is one of the most common electively performed surgeries in infants. Infants requiring this surgery have frequently been born extremely premature with consequent underlying chronic lung disease (CLD).

The specific aim of the parental survey is to start consumer engagement on what matters to parents of babies who have undergone inguinal hernia surgery. The Women & Children's Health Network are planning on designing a large trial on what clinicians think are important outcomes regarding neonates, but they are wanting to ensure that the trial is also looking at outcomes that matter to parents.

Did your baby have an inguinal hernia repair between 2021-2023?
To enter the research survey, please click this link:


Home Oxygen Therapy for Infants with Broncopulmonary Dysplasia

The University of New South Wales and Royal Hospital for Women & School of Women's and Children's Health are searching for Parent and Carer Opinions on Home Oxygen Therapy for Infants with Bronchopulmonary Dysplasia.
The purpose of this research is to investigate parent and carer opinions regarding the use of home oxygen therapy for pre-term infants, including satisfaction, usefulness, and important outcomes. The results are hoping to determine whether any services would have improved family experiences.
If you are able to take part, the results of this survey may help improve future treatment of children with BPD (including those in the Miracle Babies Foundation community), however may not directly benefit survey participants.

Behavioural Impacts on Children after the Perinatal Death of a Sibling

As a participant in this research, you can take part in an interview with the researchers, at your convenience, to describe your experiences of perinatal loss (the death of a child due to miscarriage, stillbirth or neonatal death – death within the first 28 days of life) and how it impacted your child/ren that were already born before your loss/es.

To be eligible you meet all of the following;
- be at least 18 years of age or older, fluent in English
- have had existing child/ren at the time you experienced perinatal loss
- the perinatal loss must have been between 6 months and 10 years ago

Your participation would involve completing a one off interview, lasting approximately one hour. All data will be de-identified prior to analysis and publication.

You may not receive a direct benefit from this study, but your participation may help discover ways to better support children and families after perinatal loss.



HAPP-e is an innovative international study on the health and quality of life of adults born preterm.

So, what do you need to participate? You must be older than 18 years old and have been born before the 37th week of gestation, anywhere in the world.

To participate, access, register and click the link you receive by e-mail.

It’s that easy and you will be contributing to improving knowledge on adult life after preterm birth! 

All adults (18+) born before the 37th week of gestation are invited to register and fill HAPP-e's questionnaire

Fathers Perceptions of Having a Baby in the Neonatal Unit during Covid-19
Have you recently become a dad during the Covid-19 pandemic and was your baby admitted to a neonatal unit or discharged during the pandemic? If you've answered yes, we would like to invite you to participate in this international research survey to explore the perceptions and experiences of fathers of infants who are currently on admission in the neonatal unit or have been discharged during the Covid-19 pandemic. The survey takes 15-20 minutes to complete. 

Survey Link

Confirmation Content