If your baby is receiving care at Grace, there are several ways you can get involved in research:

Research participant

If you’re a parent of a baby receiving care in Grace, you and your baby have the opportunity to participate in research studies. You can talk to your clinical team about research studies  and whether there are opportunities appropriate for you and your baby. 

Research family advisor

As a family member, you may like to volunteer your time to enhance patient-oriented research. 

By becoming a member of a research study team, you bring a unique, important patient and family perspective to the research process. Your input and participation in decision-making throughout the research process from planning to execution and interpretation will be appreciated. 

We are currently in the process of developing this committee.

There are a range of different studies in progress with different types of involvement. 

These include:

• Questionnaires, surveys and interviews, are used to collect information on disease outcomes, behaviour, opinions, quality of life or parent satisfaction
• Observational/prospective research studies using physical examinations, developmental assessments, imaging and specimen collection or diagnostic methods.
• Intervention studies that look at a therapy such as a drug, medical device, equipment or new treatment mode.

Body composition study

We are interested in gaining knowledge about the body composition of newborns with abdominal surgical and cardiac problems, and how this relates to later development.

ECIDNA study

This research examines the effects of developmental care education provided to nurses and its potential benefit for parents and babies in the NICU.

NEC ultrasound study

We are interested in exploring whether clinician-performed bedside abdominal ultrasounds  improve the diagnosis of necrotizing enterocolitis (NEC).

PROTECT trial 

We are evaluating the effect of treatment with Pentoxifylline to improve long-term outcomes in extremely preterm infants with late-onset sepsis or necrotizing enterocolitis (NEC).

Developmental outcomes

This study collects deidentified developmental outcomes of infants following assessment in the Grace Development Clinic in order to better understand the impact of early surgery and time in the NICU.

The families FILM study

This study is investigating how infants with medical complications develop movements in order to inform the timing of when to use the General Movements assessment in follow-up.

The sleep trend study

This research involves measuring trends of oxygen and carbon dioxide levels in blood during sleep in newborns prior to discharge home from Grace.

POSS study

This study is gaining parents' and staff views about infant sleep while in Grace.

Use of the General Movements Assessment with infants following surgery in the neonatal period

Dr Cathryn Crowle, Senior Occupational Therapist
This was the first study of its kind to investigate the use of the General Movements Assessment (GMA) with infants following major surgery in the first weeks of life.

The GMA was found to be an excellent tool for the prediction of neurodevelopmental outcomes including cerebral palsy in this unique population. This research has changed clinical practice in the area of early detection. The GMA has been adopted as standard care in our NICU and incorporated into the multidisciplinary follow-up clinic for all infants following surgery.

This means that our infants can now be referred to specialised early intervention therapy services in the first months of life, improving the outcomes for these infants and their families.

Developmental outcomes at eight or nine years of age following major surgery in infancy (DAISy8)

Natalie Fairbairn, Senior Occupational Therapist
The study is looking at the children’s motor skills, language, attention, cognition, behaviour and academic performance, and will compare the outcomes for children who have had early heart surgery or non-cardiac surgery with children who did not undergo early major surgery.

It will also help guide the length of time that we should be following up with these children, and which children, in particular, we should be following up, and referring to early intervention services to maximise the development of children who have early surgery.