Research Priorities of Black and Hispanic Families of People with Down Syndrome

After the 2022-2024 PCORI Research Dissemination project, we discovered that many of the research interests of Black and Hispanic people with Down syndrome and their parents weren’t actually projects that had been done. So, in 2025 we held one online conversation and one in-person event at the National Down Syndrome Congress as part of the PCORI Project “Convening To Identify Patient-Centered CER Priorities of Black and Hispanic Parents of Children With Disabilities” to determine the top research priorities of Black and Hispanic people with Down syndrome and their families and the best strategies for engaging them in research.

Learn more from the Patient Centered Outcomes Research Institute.

These reports were funded through a Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington PCORI Engagement Award (EASCS-38503-IC). The views, statements, and opinions presented in this White Paper 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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Research Priority Report

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Research Brief

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Many Thanks

We want to thank our entire team of parent and professional reviewers who made the Research Priority Report and Research Brief possible and gave their excellent input!

We also want to thank the National Down Syndrome Congress, Down Syndrome Achieves, Lumind IDSC Foundation/National Down Syndrome Society, and the Down Syndrome Medical Interest Group for their support!

We’d like to further thank our student trainees who assisted in preparing this resource: Rebecca Miller, Sonia Chavez and Olivia Stanley.

And finally, many thanks to Kate Meredith for designing the reports.