Undiagnosed Diseases Program
Project members
Project lead
Professor Sharon Parker
Project lead
Florian Klonek
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Project lead
Georgia Hay
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Overview
We have partnered with Genetic Services WA and the Office of Population Health Genomics (OPHG) to study the Western Australian Undiagnosed Diseases Program (UDP-WA), an interdisciplinary ‘expert panel’ which reviews the cases of chronically undiagnosed patients.
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The aim
The current project is to understand the cognitive, motivational, and social-psychological factors that contribute to or inhibit the success and sustainability of the program. Data collection is ongoing and includes interviews with the UDP-WA expert clinicians, short written surveys, and systematic observation of the monthly expert panel meetings.
With the final goal being to develop a evidence-based recommendations on how to further enhance and sustain the success of the UDP-WA, specifically by improving clinician engagement and communication in the expert panel meetings. These recommendations will be developed in consultation with the OPHG and UDP-WA management team, and will include follow-up evaluations.​​
Industry outcomes
Building a fit-for-purpose framework
The proposed immediate outcome of the project is a comprehensive, multi-level framework of the UDP-WA that describes the factors that contribute to the current program’s success.
Communication of our findings
Dissemination of these findings will provide significant support for the further globalisation and sustainability of UDPs internationally.
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