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Led by Stacey Reynolds and in collaboration with Virginia W. Chu , this research study aims to capture the fatigue experienced and voiced by our affected individuals. Stacey Reynolds explains why they are conducting the study:


The Qualitative Arm, driven by Emma Daw (, will conduct Zoom interviews with affected individuals, siblings, and parents to capture the impact of fatigue on daily living. Here is Emma explaining what these interviews will be like:

The Quantitative Arm, driven by Mackenzie Hunter (, will then capture individuals’ self-assessment of fatigue in real-time using a novel phone application and map those ratings onto activity data collected by wrist-worn watches worn by affected individuals. Hear how Mackenzie will attempt to capture and measure type of fatigue associated with Barth syndrome



And how these types of fatigue require different types of recovery:

To participate in the Qualitative - please email Emma via

To participate in the Quantitative - please complete the eligibility survey OR email

And here is Stacey sharing why Community participation is critical for success:

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