Emotions and Questions
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Clinical Trials: A mom: Sometimes if feels like there are “Haves” and “Have Nots”
In this video, a mother of two sons with Duchenne Muscular Dystrophy talks honestly about how often in rare disease it feels like there are “haves” and “have-nots” in the community. She talks about both the division trials can create in a community but also the support you can gain.
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Clinical Trials: A mom: Sometimes if feels like there are “Haves” and “Have Nots”
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The hard truth is that not everyone will qualify or meet the inclusion criteria
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Clinical Trials: Inclusion and Exclusion Criteria; Age and Ability of the child are often key factors
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Clinical Trials: a Study Coordinator reflects on the Emotional Costs
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Study Coordinator Talks About Commonly Asked Questions - Site Visits and Access
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Clinical Trials: Waiting for an emerging therapy
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Clinical Trials: A mom – “I hope I get to make that decision whether to participate and that I make the right decision.”
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Clinical Trials: My son participated in double-blind placebo study…I did not anticipate the extended trial timeline
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Clinical Trials: A mom considers her risk aversion. “For me it’s more about whether this is the right thing for her.”
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Managing Expectations: Trials are a learning process and timelines change
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Clinical Trials: Child Life can help make the trial experience better for your child.
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Clinical Trials: A Strong, Unified Disease Community Helps. Stay active and engaged, even if your subgroup doesn't yet have a therapy.
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How can I best advocate for my child?
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Clinical Trials: Survivor’s guilt and my place in the community.
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For the patient that doesn't qualify, there are other ways to participate
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Clinical Trials: The Role of Natural History Studies
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