Prader-Willi Syndrome Research WA Consumer Reference Group REF PH 000625

Are you the parent, carer or guardian of a child with Prader-Willi Syndrome? Would you like to join a reference group to help researchers understand the experience of living with this syndrome?

Applications close: As soon as possible

About the project

Children with Prader-Willi Syndrome often have difficulty breathing when asleep, this can lead to children feeling tired and behavioural issues during the day. Growth hormone is a very useful medicine for children with this syndrome, but it can worsen obstruction of the upper airway in sleep. In very rare cases this may be dangerous for a child who can’t breathe freely while sleeping. When children start treatment with Growth Hormone, doctors usually carry out a sleep study at the beginning of treatment and after six months.

This new study will use the data collected from a large group of children with this syndrome to look at the effects of Growth Hormone on breathing while asleep. The results will help researchers better understand what the causes of breathing problems are for children with Prader-Willi Syndrome and when is the best time to start Growth Hormone treatment. These results may also have an impact on the use of sleep studies.

About the position

Researchers from Princess Margaret Hospital for Children and Telethon Kids Institute are looking for 8 – 10 consumers/community members to join the Prader-Willi Syndrome Research WA Consumer Reference Group.

What am I expected to do?

The consumers/community members of the reference group will:

  • Provide a “lived- experience” perspective on the research activities
  • Advise and support on grant applications and plain language summaries
  • Advise on the issues and research priorities important to this group
  • Provide feedback on the relevance, understanding and value of the project
  • Help to develop ways to inform the wider community about the research
  • Provide a link between the community and the researchers
  • Provide their ‘lived experience perspective on respiratory and sleep health studies in young children with Prader-Willi Syndrome
  • Advocate on behalf of consumers and the community where appropriate

What skills or experience do I need?

You need to be a parent, guardian or primary carer of a child with Prader-Willi Syndrome and  live in Western Australia.

What is the time commitment?

Members will initially join the group for one year. During this year, the reference group will meet four times with the possibility of additional meetings as determined by the group. Depending on the progress of the project, members may then be invited to stay on for a further two years. It is planned that the first meeting will be held in early August, 2017.

Where will meetings be held?

Telethon Kids Institute, Roberts Road, Subiaco, WA.

What support is offered?

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

Applications close:  Friday 21st July 2017