Top Research Priorities
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.
Research Priority Report
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Open in new tab Research Brief
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Disseminating Research
Between 2022-2023, we held community conversations with patient advocacy leaders and Black and Hispanic parents of children with DS to get their input on helpful practices for medical providers and advocacy organizations to use when supporting new and expectant parents and sharing research-based information. Then, we shared the parent recommendations with health equity experts and medical providers to identify strategies, platforms, and formats to share research with Black and Hispanic new and expectant parents of children with DS.
Below are white papers and courses for advocacy organizations and medical professionals with a summary of strategies identified by parents and interdisciplinary experts so that medical and advocacy organizations can improve their support for Black and Hispanic new and expectant parents of children with DS.
Read a summary about the project: Patient Centered Outcomes Research Project
“These Courses and White Papers were funded through a Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington PCORI Engagement Award (EADI-24186). The statements presented in these materials are solely the responsibility of the authors and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute® (PCORI®), its Board of Governors, or Methodology Committee
Recommendations for Medical Professionals
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Recommendations for Medical Professionals (Text Only)
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Recommendation for Advocacy Organizations
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Recommendations for Advocacy Organizations (Text Only)
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PCORI Courses
PHT 207: PCORI Medical Provider Module: Disseminating Patient-Centered Outcomes Research Results about Disabilities to Black and Hispanic Parents
PHT 208: Advocacy Group Leader Module: Disseminating Patient-Centered Outcomes Research Results about Disabilities to Black and Hispanic Parents
Many Thanks
We want to thank the National Down Syndrome Congress, Down Syndrome Achieves, Lumind IDSC Foundation/National Down Syndrome Society, the Black Down Syndrome Association, and the Down Syndrome Medical Interest Group for making the reports possible in 2025!
We also want to thank our entire team of 36 parent and professional reviewers who made the White Papers possible and gave their excellent input from 2022-2024!
- Albert Pless, MS, DEI Director, Health Equity Reviewer
- Angela Trepanier, MS, CGC, Professor, Center for Molecular Medicine and Genetics, Wayne State University, School of Medicine, Medical Reviewer
- Asha N. Talati MD MSCR, Assistant Professor of Maternal Fetal Medicine and Clinical Genetics and Genomics at the University of North Carolina Chapel Hill, Medical Reviewer
- Beth A. Pletcher, MD, FAAP, FACMG, Emeritus Professor, Rutgers New Jersey Medical School, Emeritus Professor, Rutgers New Jersey Medical School, Medical Reviewer
- Brian Skotko, MD, MPP, Emma Campbell Endowed Chair on Down Syndrome, Massachusetts General Hospital, Medical Reviewer
- Ceci Arispe, Parent Reviewer
- Dena Cherry-Brown, MPH, Health Equity Reviewer
- Evelyn J. Acevedo, Parent Facilitator for Club21, Former Early Childhood Educator, Inclusion Leadership Team Member for local preschool program (IEEEP), and Parent Reviewer
- Iris Barker, Community Liaison for Club 21, Include CA Treasurer, Bridge Builders CA independent facilitator for SDP program, Parent and Advocacy Organization Reviewer
- Jennifer de la Cruz, MMSc, PA-C, Health Equity Reviewer
- Jessica L. Franks, DrPH, MPH, CHES, Health Equity Reviewer
- Julianna Cebollero, PharmD, BCOP, Parent Reviewer
- Linda Smarto, Executive Director from the National Association for Down Syndrome, Advocacy Organization Reviewer
- Martha Padilla, Parent Reviewer
- Murugu Manickam, MD, MPH, FACMG, Clinical Geneticist/Genomicist at Nationwide Children’s Hospital, Medical Reviewer
- Sarah Cullen, Family Support Director at the Massachusetts Down Syndrome Congress and the National Parents First Call Center, Advocacy Organization Reviewer
- Sharon Tate, Parent Reviewer
- Tatiana Salinas, Massachusetts Down Syndrome Congress Bilingual (Spanish) Family Support Specialist, Advocacy Organization and Parent Reviewer
- Tawana Williams, Parent Reviewer
- Terria Brown, First Call Program Leader, Down Syndrome Association of Maryland, Advocacy Organization and Parent Reviewer, Massachusetts Down Syndrome Congress Community Health Advocate Volunteer, (TRACC) Tufts Research Administration and Compliance Cohort, Tufts University Office of the Vice Provost for Research
We’d like to further thank our student LEND trainees who assisted in preparing these resources: Cameron Elder (currently pursuing a Doctorate in Physical Therapy), Hannah Keene, MS (currently pursuing a PhD in Special Education) and our other practicum students, Sonia Chavez and Olivia Stanley.
And finally, many thanks to Kate Meredith for designing the reports.