Building a Diverse Community for Down Syndrome Research Virtual Workshop

Overview of Meeting

• Engaging the Down syndrome Community
• Expand Diversity of Down syndrome Participants
• Increase Diversity of Down syndrome Researchers/Trainees

Day 1: Tuesday, September 20, 2022

12:00 p.m. - 12:05 p.m. Welcome Remarks from INCLUDE Team
Courtney F. Aklin, Ph.D., Acting Associate Deputy Director, National Institutes of Health (NIH); Introduced by Yadira Carrillo (Self-Advocate, Entrepreneur)

12:05 p.m. – 12:45 p.m. Overview of Diversity in DS Research & Listening Sessions Feedback Session Chair and Moderator: Sujata Bardhan, M.S., Ph.D. Program Director, NICHD, NIH

• Listening Session Summary from Families
  Linda Garcia, B.A., Communications and Outreach Coordinator INCLUDE Project and DS-Connect®
• Listening Session Summary from Researchers
  Aruna Natarajan, M.D., Ph.D., Program Director, NHLBI, NIH
• The Community Engagement Alliance Consultative Resource (CEACR)-Leveraging lessons for the Down syndrome community
  Maliha Ilias, Ph.D., Program Director, Center for Translation Research and Implementation Science | Health Inequities and Global Health Branch, NHLBI, NIH

12:45 p.m. - 1:00 p.m. Break

Session 2: Stakeholders’ Perspectives: Panel Discussion

Session Chair and Moderator: Erika Tarver, M.S., Senior Project Manager, Division of Neuroscience, NIA, NIH

Panel Attendees:

• Families and Self-Advocates
  • Nora Bahamonde, Social Insurance Specialist, Past Latino Outreach Director for the DS Association of Northern Virginia, B.A., Communication Studies and Diversity Awareness (Hispanic)
  • Yadira Carrillo, Entrepreneur (Self-advocate, Hispanic)
  • Kate Dougherty, President, NDSC Board of Directors, Rural Communities
  • Dolores Harden, Member Navajo Nation Advisory Council on Disabilities (Native American)
  • Taylor Murphy, High School Student, GLOBAL Self-advocate Speaker, (African American)
  • Shauntel Neal-Howe, Past President NDSC Board of Directors, B.S., M.B.A. (African American)
  • Chidanand Rajghatta, Columnist, Washington Bureau Chief for the Times of India, M.S., Communication (Asian-American)
  • Jose Torres Rodriguez, President of Fundación Puertorriqueña Síndrome Down (Hispanic |Puerto Rico Underserved Communities)
• Researchers:
  • Joaquin Espinosa, Ph.D., Professor, Department of Pharmacology, University of Colorado, Denver
  • Andrew McCormick, M.D., FAAP, Associate Professor, Department of Pediatrics, University of Pittsburgh
  • Esther Son, Ph.D., Assistant Professor, College of Staten Island, CUNY
  • Noemi Spinazzi, M.D., Pediatrician, Assistant Professor, Medical Director UCSF Down Syndrome Clinic
  • Ignacio Tapia, M.D., Associate Professor of Pediatrics, Children’s Hospital of Philadelphia

2:45 p.m. - 3:00 p.m. Break

Session 3: Addressing Racial and Ethnic Health Disparities in Scientific Research

Session Chair and Moderator: Marishka Brown, Ph.D., Director, NCSDR, NHLBI, NIH

3:00 p.m. - 5:00 p.m. Inclusion Across the Lifespan

• Dawn Corbett, M.P.H., NIH Inclusion Policy Officer, Office of Extramural Research
• Tracie Rosser, Ph.D., Assistant Professor, School of Medicine, Emory University DS360 Project-Health Disparity
• Andrea Kelly, M.D., MSCE, Professor of Pediatrics, and Victoria Miller, Ph.D., Psychologist, Children’s Hospital of Philadelphia (CHOP)-Consent/Assent issues in under-served groups
• Marishka Brown, Ph.D., Director of the National Center on Sleep Disorder Research (NCSDR, NHLBI, NIH)-Sleep Issues in DS (outcomes across race)

5:00 p.m. - 5:30 p.m.

Open Discussion End of Day 1

Day 2: Wednesday, September 21, 2022

12:00 p.m. - 12:05 p.m. Remarks from INCLUDE Team | Engaging the Community
Nathaniel Stinson, Jr., Ph.D., M.D., M.P.H., Director, Community Health and Population Science, NIMHD, NIH

Session 4: Ensuring Representation in the DS Scientific Workforce-Investigators and Trainees

Session Chair and Moderator: Huiqing Li, Ph.D., Program Director, NHLBI

12:05 p.m. - 1:15 p.m.

INCLUDE DS Scientific Workforce

• INCLUDE Initiatives to Promote Diversity (FOAs, workshops, research plan)
  Sujata Bardhan, M.S., Ph.D., Program Director, NICHD, NIH
• COSWD Presentation
  Christy Ley, Ph.D., Social Science Analyst, COSWD, NIH
• Neuroscience Workforce Diversity
  Michelle Jones-London, Ph.D., Chief, Office of Programs to enhance Neuroscience Workforce Diversity, NINDS, NIH
  Jianhua Wu, Ph.D., Associate Professor, Georgia State University
• Q&A

1:15 p.m. - 1:30 p.m. Break

Session 5: Enhancing Participant Diversity in Down Syndrome Clinical Research

Session Chair and Moderator: Sujata Bardhan, M.S., Ph.D., Program Director, NICHD, NIH

1:30 p.m. - 3:00 p.m.

• The Alzheimer’s Disease/Down Syndrome Outreach, Recruitment, and Engagement (ADDORE) Core –Lessons learned, best practices, relationship building etc.
  • Annie Cohen, Ph.D., Associate Professor of Psychiatry, Department of Psychiatry, University of Pittsburgh School of Medicine
  • Carey Gleason, Ph.D., M.S., Associate Professor, Alzheimer’s Disease Research Center, University of Wisconsin-Madision
  • Nicole Shiree Whitmoyer, B.S., Project Manager, University of Wisconsin- Madison
  • Maria Nogueron and Danny Chafetz, Community Outreach Specialists
• Recruitment Innovation Center
  • Tiffany L. Israel, M.S.S.W., Research Services Consultant for the NIH Recruitment Innovation Center at Vanderbilt University
  • Jasmine Bell, M.P.H., Research Consultant at the Recruitment Innovation Center at Vanderbilt University
  • Devan Ray, B.A., Communication Sciences and Disorders, Community Engagement Studio Team, RIC Community Advisory Board and the Diversity, Equity, and Inclusion work group for the Recruitment Innovation Center at Vanderbilt University Medical Center
  • Janice Nodvin, Executive Director/ Clinic Director at Adult Disability Medical Home, Inc. Atlanta, GA
• Discussion