Supporting Patients, Families and Caregivers Across the Research Ecosystem and Closing Remarks

June 24, 2021

Beyond Enrollment – Understanding Lived Experiences from Patients & Families Participating in Research

  • The impacts and burden of care for patients, families, and caregivers and what researchers might not see
  • Implications for mental health and emotional well-being
  • Bridging gaps between the researchers/community – supporting them through the urgency/waiting

Implications of New Modalities & Investigational Therapies: Risk, Benefit, & Decision-Making for Families

Patient Support in Context: Navigating Misinformation in Public Discourse

Building Trust with Patients & Advocates in Research

  • Transparent and culturally competent communication and education
  • Establishing feedback loops and setting expectations on timelines and results


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