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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)
2017-2018 National Rare Diseases Caregiver Survey Findings
Grace Whiting, JD
National Alliance for Caregiving, United States
President and Chief Executive Officer
Establishing a European Network of Young Persons Advisory Groups to Increase the Involvement in Pediatric Clinical Research
Begonya Nafria, MEd
Sant Joan De Déu Research Institution, Spain
Patient Engagement in Research Coordinator
What's Love Got to Do with It? Illuminating the Caregiver Treatment Journey
Ann M Moravick
United States
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