Welcome to this learning module on disseminating patient-centered outcomes research results about disabilities to Black and Hispanic parents.
Note: This learning module was funded through a Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington PCORI Engagement Award (EADI-24186). The views, statements, and opinions presented in this module are solely the responsibility of the author(s) and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute® (PCORI®), its Board of Governors, or Methodology Committee.
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Course Content
Acknowledgments and Background
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Introduction
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Course Objectives
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Top Patient Centered Outcomes Research (PCOR) Questions Valued by Black and Hispanic Parents of Children with Down Syndrome
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1 Quiz
Knowledge Check: Top PCORI Research Questions
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Recommendations for Advocacy Organizations
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10 Topics
7 Quizzes
Recommendation 1: Engage in medical outreach and training.
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Reflection Activity: Recommendation 1
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Recommendation 2: Engage in community outreach and training.
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Reflection Activity: Recommendation 2
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Recommendation 3: Offer parent outreach and training.
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Reflection Activity: Recommendation 3
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Recommendation 4: Offer new and expectant parent support.
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Reflection Activity: Recommendation 4
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Recommendation 5: Provide all family members with education and support.
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Recommendation 6: Disseminate resources and research about Down Syndrome
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Reflection Activity: Recommendation 6
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Recommendation 7: Utilize technology.
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Reflection Activity: Recommendation 7
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Recommendation 8: Prioritize representation in resources and support.
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Reflection Activity: Recommendation 8
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Recommendation 9: Prioritize inclusive language.
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Recommendation 10: Advocate for equity.
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References & Resources:
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Course Evaluation:
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