Building Capacity in the African American ASD Community for Patient-Centered Outcomes Research

by | Jul 30, 2021 | Family Voices

Family Voices is excited to announce that we have been awarded a Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington PCORI Engagement Award, for a groundbreaking project, titled “Building Capacity in the African American ASD Community for Patient-Centered Outcomes Research,” that looks to increase engagement in ASD PCOR research by African Americans impacted by ASD and address the disparities in healthcare outcomes for African American children with ASD. This project will:

  • Create a research community of African American stakeholders, and ASD researchers and practitioners from the Autism Care Network.
  • Create culturally responsive training materials for African American stakeholders, and ASD researchers about engaging African Americans in ASD research.
  • Use the training materials to conduct skill-building leadership trainings for African American stakeholders.
  • Provide training to build the capacity of researchers to partner with the African American ASD community.
  • Develop a research agenda based on the needs of the African American ASD community.

The two-year project will launch September 1, 2021 and be led by Allysa Ware, Associate Director of Programs and Strategy and parent of an 18-year old daughter with an ASD diagnosis.

Learn more about this project at pcori.org

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All children, youth, and families, especially those with special health care needs and disabilities, experience their best health and quality of life.

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Family Voices is a family-led organization that transforms systems of care to work better for all children and youth, especially those with special health care needs or disabilities. By putting families at the forefront and centering their leadership and lived expertise, we build a culture that includes everyone and fosters equitable outcomes.

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