‘Involving People in Research’ website

http://www.involvingpeopleinresearch.org.au/

This website has been developed to house resources such as the new Fact Sheet Series and will eventually provide a ‘one-stop-shop’ to support increased consumer and community participation in health research.  It is hoped that you find this website a useful tool in your endeavours to increase participation.  Your feedback is welcomed.

WA Register of Developmental Anomalies (WARDA) website

Statutory notification of birth defects and cerebral palsy in Western Australia came into effect on 7th January 2011. The Cerebral palsy and Birth Defects Registers are now combined under the new name of the Western Australian Register of Developmental Anomalies (WARDA). DSWA has been actively involved in seeing this initiative come to fruition.

kemh.health.wa.gov.au/services/register_developmental_anomalies

West Australian Research on Down syndrome, conducted at the Telethon Institute for Child Health Research (TICHR)

The Down Syndrome NOW (Needs, Opinions, Wishes) Report is available for reading here.

Understanding Down Syndrome: Capturing Family Experiences Through Research is available for reading here.