Undiagnosed Diseases Program
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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.​​