WARDA Consumer Reference Group seeking new members

9, Nov 2017

The consumer reference group is seeking members who have experience of developmental anomalies and their impact on individuals, families and the community.

About the Western Australian Register of Developmental Anomalies

The Western Australian Register of Developmental Anomalies (WARDA) records and monitors developmental anomalies in Western Australia using two registries – the Western Australian Birth Defects Registry and the WA Cerebral Palsy Registry.

Approximately one baby in every twenty (5%) is born with a developmental anomaly in Western Australia. WARDA collects the information about where and when these events occur and this guides research into the causes, prevention and management of these conditions.

WARDA 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.

Further information about the Register can be found on the website http://www.kemh.health.wa.gov.au/services/register_developmental_anomalies/index.htm

What is a developmental anomaly?

A developmental anomaly is a broad term used to define conditions which are present at conception or occur before the end of pregnancy.

An anomaly is considered as a departure from normal development and can affect structure (how the body is built) or function (how the body works).

Anomalies can be diagnosed at any time during pregnancy, after stillbirth or termination of pregnancy, or after live birth, but before six years of age.

Developmental anomalies include cerebral palsy, spina bifida, Down syndrome and phenylketonuria (PKU). In the case of cerebral palsy, a small number also occur after birth.

Developmental anomalies are also sometimes called birth defects, congenital malformations or congenital anomalies.

About the position

The consumer reference group reviews applications from researchers for the use of the data that is held in the WARDA.

What am I expected to do?

The consumers/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 WARDA
  • 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?

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

Applications close: Friday 13 October 2017