Clinical Care and Research Article

A collaborative study between The University of Western Australia, Perth Children’s Hospital, The Kids Research Institute Australia and Down Syndrome WA, has identified the top priorities, according to patients and carers, for clinical care and research for children with the genetic condition.

Down Syndrome WA (DSWA) is incredibly proud to have been part of this groundbreaking collaboration that produced the recent research paper on prioritising care for individuals with Down syndrome.

While the focus of this research is on enhancing care and addressing the needs of our community, we would like to take a moment to recognize the invaluable contributions of our team, particularly Nikki and Cassandra .

Nikki Schwagermann, our Senior Family Support Coordinator, played a pivotal role from the outset. She was involved in early discussions about respiratory conditions and, through her deep understanding of our community’s needs, highlighted other critical priorities that shaped the direction of this research. As both a parent and a dedicated DSWA staff member, Nikki’s insights and active participation were instrumental in ensuring that the research truly reflected the lived experiences of families.

Cassandra Hughes, our CEO, also made significant contributions as a community member. She attended numerous meetings, collaborated on research, and workshopped the priorities that would eventually lead to the top 100 and, ultimately, the Top 10 priorities for Down syndrome care.

We encourage you to read more about this important research and its outcomes here: UWA Media Release.

Thank you the amazing research team for their collaboration and dedication to bringing this to fruition!