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Adaptation to living in a family with Barth syndrome: The influence of carrier status and social support

Johns Hopkins Medicine IRB000099811

What is this research study? As more boys and men are correctly diagnosed with Barth syndrome, mothers, sisters, daughters, and grandmothers face their own challenges. This questionnaire study builds on interviews we did with Barth syndrome carriers to measure the emotional, family, reproductive, and psychological implications of having a relative with Barth syndrome. We are asking ALL ADULT WOMEN to join. We hope study results will help both health care providers and patient organizations provide better care to women in families with X-linked conditions, especially Barth syndrome! Learn more...

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