Dr. Stacey Reynolds from Virginia Commonwealth University is conducting a research study examining fatigue in Barth Syndrome. She will be looking at how fatigue in individuals with Barth Syndrome impacts daily routines and roles. She is asking for individuals with Barth, and their family and close friends to participate in interviews and focus groups via Zoom.
Participation requires about 30-90 minutes of your time.
You are eligible to participate if you:
• Are an individual with Barth syndrome age 5 years or older OR Are age 12 years or older and are a parent, sibling, close family, or close friend of an individual living with Barth Syndrome
• Are able to understand and answer questions in English
• Have access to the Zoom platform (or a telephone if needed)
If you are interested in participating or want more information email the research team at: dawe2@vcu.edu OR reynoldsse3@vcu.edu