- Lectures / Webinars
- Engaging Patients & Families in Research: The Global Parent and Stakeholder Perspective
Engaging Patients & Families in Research: The Global Parent and Stakeholder Perspective
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ICNC2024
Symposia: Engaging Parents and Stakeholders To Advance Scientific Research In Child Neurology
Engaging Patients & Families in Research: The Global Parent and Stakeholder Perspective
Jolene Kruger
It is becoming standard to partner with patients, families and affiliated Patient Advocacy Organizations to move research priorities forward. Having multi-stakeholder engagement and insight in study design, core outcome measurement, implementation and follow-up brings many benefits to tackling some of the most challenging research questions in pediatric neurology and beyond. Learn from a global perspective of families in the Hope for HIE community -- the worldwide Patient Advocacy Organization for neonatal and pediatric-acquired HIE, connecting over 8,000 families worldwide -- and how these perspectives are helping to move forward advocacy, therapeutic development, and multi-center research studies, as well as disseminating research and building health information literacy.
Learning objectives:
Understand best practices for involving parents and stakeholders in clinical research.
Describe how parents and stakeholders can guide research from proposal to dissemination
Other Lectures in this symposium
Engaging parent partners to improve the science: Lessons from the Neonatal Seizure Registry