"Solving the Unsolvable”:
Uncovering the Active Ingredients in the
WA Undiagnosed Diseases Program

Project Brief

Approximately 350 million people worldwide are affected by a rare disease, 2 million of whom live in Australia. The rare and complex nature of these diseases creates a disproportionately large impact on the public health system, and presents a significant challenge to clinicians trying to find answers for these patients.

 

The Western Australian Undiagnosed Diseases Program (UDP-WA) is part of a global movement to meet this urgent patient need. The UDP-WA pools the clinical expertise and decision-making skills of interdisciplinary clinicians from across WA and utilises cutting-edge technology – and it has achieved unprecedented success.

 

However, in the words of one of the clinicians, “Why is it that these children have seen so many other specialists, but only here do they receive a diagnosis?”

 

The aim of this research project is to analyse the individual, team, organisational, and national-level factors that contribute to the success of the UDP-WA, with a vision to enhance the multi-level systems and protocols that will support the long-term integration of interdisciplinary clinical expertise within the program.

 

Upon completion, the insights garnered through this project will be translated to other interdisciplinary settings in the healthcare sector and beyond.

Contact for more information: Georgia Hay and Florian Klonek

 

Faculty

 

             Florian Klonek                                   Sharon Parker

Student

 

 

 

 

 

 

 

 

 

 

              Georgia Hay

Partners:

  • Gareth Baynam (Genetic Services WA);

  • Stephanie Broley (Genetic Services WA);

  • Alicia Bauskis (Department of Health Office of Population Health Genomics);

  • Hugh Dawkins (Department of Health Office of Population Health Genomics)

Stories and Sketches
about this project
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