Preterm birth and lung health REF NUMBER TK00240/429

Do you have a child who was born preterm (before 32 weeks)? Are you a young adult who was born prematurely (before 32 weeks)? Researchers at Telethon Kids Institute are looking for 8 people to join a Community Reference Group to provide advice on two projects.

Applications have now closed

About the projects

Being born prematurely can affect the development of babies’ lungs, leading to breathing problems in childhood and into adult life. To better understand the long-term impact of preterm birth on breathing, researchers are running two studies.

The first study will follow-up a group of 19 year-olds who were born preterm and have previously undergone lung health assessments at 6 and 11 years of age. The researchers are wanting to see if the information obtained from the lung health assessments can predict how their lungs look and behave now they are 19 years old.

The second study will look at:

  • how inflammation in the lungs contributes to ongoing breathing problems during childhood
  • how treatment with an inhaled anti-inflammatory medicine changes the lung disease in preterm children aged 6 – 12 years


About the Position

Researchers from Telethon Kids Institute are looking for 8 consumers/community members to join a community reference group.

What am I expected to do?

The Community Reference Group members will provide advice on research activities occurring across the two projects. Specifically, members will:

  • Provide a “lived-experience” perspective on the impact of preterm birth, particularly focusing on lung health
  • Review research documents including project consent forms, information sheets and plain language summaries
  • Provide advice on strategies for recruiting participants to the studies and the suitability of proposed tests
  • Help to develop ways to inform the wider community about the research
  • Provide feedback on priorities for future research


What skills or experience do I need?

You need to be a parent, guardian or family member of a child who was born preterm (before 32 weeks) or a young adult who was born preterm (before 32 weeks).

What is the time commitment?

The members will attend 3 meetings per year over 3 years. The first meeting will be held in March/April 2018. Each meeting will be no longer than two hours.

Some time may also be required outside of meetings to review project documents. On average, this activity would involve two hours of your time.

Where will meetings be held?

Telethon Kids Institute, 100 Roberts Road, Subiaco, WA.

What support is offered?

$30 honorarium per hour for meetings attended and time spent reviewing documents. Free training and mentoring is offered by the Consumer and Community Health Research Network.

Applications have now closed