Theme: Clinical Trial: Decision-Making

Clinical Trials: A mom on assessing risk when her child has a treatable disease

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Clinical Trials: A mom on assessing risk when her child has a treatable disease

In this video, a mother of two sons, Austin and Max with Duchenne Muscular Dystrophy and a son, James with a Primary Immune Deficiency, talks about evaluating her risk tolerance in finding a curative treatment for James. She talks about the barriers and biases when your child’s disease is considered a chronic, manageable condition and the limitations on the quality of her son’s life.