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 is 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
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
Recommendations for Medical Professionals
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Recommendation for Advocacy Organizations
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Many Thanks
We want to thank our entire team of 36 parent and professional reviewers who made this resource possible and gave their excellent input!
- Albert Pless, MS, DEI Director
- Angela Trepanier, MS, CGC, Professor, Center for Molecular Medicine and Genetics, Wayne State University, School of Medicine
- Asha N. Talati MD MSCR, Assistant Professor of Maternal Fetal Medicine and Clinical Genetics and Genomics at the University of North Carolina Chapel Hill
- Beth A. Pletcher, MD, FAAP, FACMG, Emeritus Professor, Rutgers New Jersey Medical School, Emeritus Professor, Rutgers New Jersey Medical School
- Brian Skotko, MD, MPP, Emma Campbell Endowed Chair on Down Syndrome, Massachusetts General Hospital
- 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
- 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
- Martha Padilla, Parent Reviewer
- Murugu Manickam, MD, MPH, FACMG, Clinical Geneticist/Genomicist at Nationwide Children’s Hospital
- Sarah Cullen, Family Support Director at the Massachusetts Down Syndrome Congress and the National Parents First Call Center
- Sharon Tate, Parent Reviewer
- Tawana Williams, Parent Reviewer
- Terria Brown, First Call Program Leader, Down Syndrome Association of Maryland, Parent Reviewer
We’d also like to thank our student LEND trainees who assisted in preparing this resource: Cameron Elder (currently pursuing a Doctorate in Physical Therapy) and Hannah Keene, MS (currently pursuing a PhD in Special Education).