Goal 2: Reduce Human Disease

Cardiac Sarcoidosis

There is a fundamental gap in our knowledge about many aspects of cardiac sarcoidosis. Isolated cardiac involvement poses a particular challenge for diagnosis. Delay in establishing the correct diagnosis can be long and impacts in outcome since delay in therapy adversely impacts on outcome in these patients. There should be an increased effort to increase our knowledge about cardiac sarcoidosis; it's natural history, it's diagnosis , risk stratification and optimization of therapy.

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Is this idea a Compelling Question (CQ) or Critical Challenge (CC)? : Critical Challenge (CC)

Details on the impact of addressing this CQ or CC :

If there is shortening of the delay in diagnosis, this would have a tremendous impact on outcome.

If there is improvement in risk stratification this would also improve outcome. Better knowledge of the natural history may allow earlier detection of cardiac involvement and prevention of major cardiac complications of cardiac involvement

Feasibility and challenges of addressing this CQ or CC :

This is a "rare disease" but there are registries that have patient populations that may be sufficient to address some of the challenges of "rare diseases". Not enough funding is currently dedicated to these "rare" diseases to improve some of the parameters indicated (delay in diagnosis).

Name of idea submitter and other team members who worked on this idea : Frank B.

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Idea No. 1011