Simulating the Rare Disease Diagnostic Journey

Abstract

In this paper, we propose a demonstration of a race to diagnosis game for a given rare condition. By simulating a rare disease diagnosis scenario, we can attain statistical significance to evaluate pre-diagnostic technology in a laboratory study (which will take place after the conference) by recruiting participants from the general population, rather than from rare disease groups. No data will be collected at the conference, but attendees will be given the opportunity to play the game using an interactive presentation. This demonstration will facilitate discussions on creative solutions to challenges regarding participant recruitment as well as alternative approaches to study design.