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Beyond Adult Patients, Untapped Advisors in Clinical Development: Adolescents, Parents, Siblings, and Spouses
Session Chair(s)
Jennifer Helfer, PHD
Senior Director, Patient Advocacy and Engagement, Corporate Affairs, Viridian Therapeutics, Inc., United States
As organizations involve patients, caregivers, and other untapped advisors in the design of clinical trials, questions exist about how best to incorporate the perspectives of these audiences and validate their contributions. Panelists will discuss how organizations are integrating these advisors in drug development.
Learning Objective : Describe the advantages, practical difficulties, and unanswered questions with involving children, young adults, parents, siblings, partners and other untapped advisors in the clinical development process.
Speaker(s)
Grace Whiting, JD
President and Chief Executive Officer, National Alliance for Caregiving, United States
2017-2018 National Rare Diseases Caregiver Survey Findings
Begonya Nafria, MED
Patient Engagement in Research Coordinator, Sant Joan De Déu Research Institution, Spain
Establishing a European Network of Young Persons Advisory Groups to Increase the Involvement in Pediatric Clinical Research
Ann M Moravick
, United States
What's Love Got to Do with It? Illuminating the Caregiver Treatment Journey
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