Beyond Adult Patients, Untapped Advisors in Clinical Development: Adolescents, Parents, Siblings, and Spouses
Jennifer Helfer, PhD, MA
bluebird bio, 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 : To describe the advantages but practical difficulties in involving children and young people (CYP) in drug development.
To define how eYPAGnet is providing a single point of contact to a consortium of YPAGs enabling sponsors to engage with CYP in an ethically acceptable and productive framework.
To share best practices of YPAG members of the network involved in projects around Europe.
2017-2018 National Rare Diseases Caregiver Survey Findings
C. Grace Whiting, JD
President and Chief Executive Officer
National Alliance for Caregiving, United States
Establishing a European Network of Young Persons Advisory Groups to Increase the Involvement in Pediatric Clinical Research
Begonya Nafria Escalera, MEd
Patient Advocacy - Coordinator
Hospital Sant Joan De Déu, Spain
What's Love Got to Do with It? Illuminating the Caregiver Treatment Journey
Ann M Moravick
Rx4good, United States