Western Australian Register of Developmental Anomalies Consumer Reference Group REF WARDA01

Are you a parent or carer of a child with developmental anomalies such as (but not limited to) cerebral palsy, spina bifida, Down Syndrome or phenylketonuria (PKU), and understand the impact of these conditions on individuals, families and the community? The Western Australian Register of Developmental Anomalies is looking for new members to join their Consumer Reference Group.

Applications close: As soon as possible

About the Western Australian Register of Developmental Anomalies

Approximately one baby in every twenty (5%) is born with a developmental anomaly in Western Australia. The Western Australian Register of Developmental Anomalies (the Register) records and monitors developmental anomalies in Western Australia using two registries – the Western Australian Birth Defects Registry and the WA Cerebral Palsy Registry. Information about where and when these events occur is collected, and this guides research into the causes, prevention and management of these conditions.

The Register has been instrumental in a number of major public health initiatives, including the mandatory fortification of bread making flour in Australia to reduce the incidence of spina bifida.

About the position

The Reference Group is seeking up to eight new members who have experience of developmental anomalies and their impact on individuals, families and the community.  The Consumer Reference Group reviews applications from researchers to use the data that is held in the Register.

What am I expected to do?

The consumers and community members of the reference group will:

  • Provide a lived- experience perspective on the proposed research activities
  • Advise 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 proposed projects
  • Help to develop ways to inform the wider community about the Register
  • 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 a developmental anomaly and live in Western Australia.  You may also be an advocate for children or families with developmental anomalies or represent a group that is at risk or under-served.

What is the time commitment?

Two years; the reference group will meet four to six times per year. Reviews of proposed research projects are conducted via email out of session and generally take about an hour a month, on average.

Where will meetings be held?

King Edward Memorial Hospital, 374 Bagot Road Subiaco

What support is offered?

A $30 honorarium per hour is offered. Free training and mentoring is also offered by the Consumer and Community Health Research Network.

Applications close: Friday 3rd November, 2017