Digital Solutions

Research, innovation and digital technology solutions for rare disease

The Rare Care Centre has a strong focus on integrating existing digital technologies into the Centre care workflow and developing new digital technologies that can deliver value for children and families with Rare and undiagnosed diseases.

Aiming to deliver new insights and improve clinical outcomes, UTOPIA (Unlocking Treatment Options, Personalised pathways and In-Time Access) is one of the Centre’s digital projects that will connect Health datasets.

The first product of UTOPIA will be a semi-automated comprehensive patient summary, which is unique to each child and pre-populated using recognised data sources.

In partnership with the Hub for Immersive Visualisation and eResearch (HIVE), Curtin University and SingHealth the Centre is also developing ‘Digital Twins’ of people with rare and undiagnosed diseases from multiple types of imaging data including ultrasound, CT and MRI.

These ‘Twins’ will be used in a digital learning environment for healthcare providers and can be used to help families visualise results and conditions in a tangible way.

Above: Images taken from Virtual Twins: Empowering the Patient and Enabling Optimal Health Outcomes - abstract presented at Science on the SWAN