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Engaging Parents and Stakeholders To Advance Scientific Research In Child Neurology

Wednesday, 8 May 2024
07:15 - 08:15

Engaging parent partners to improve the science: Lessons from the Neonatal Seizure Registry
Hannah Glass

Parent and stakeholder engagement in research has the potential to be especially impactful in studies focusing on young children and adolescents, where parents can develop ongoing interactions with study teams to provide meaningful input into study design and dissemination of results.TheNeonatal Seizure Registry is a multi-center organization that has studied key questions in neonatal seizure management through observational studies. The Neonatal Seizure RegistryParent Advisory Panel has been instrumental study design, implementation, and dissemination of results for a large comparative effectiveness study funded by PCORI, as well as ongoing long-term outcome and genetic studies funded by NIH. Dr. Glasswill discuss her experience working with parents to design and conduct ongoing work of the Neonatal Seizure Registry.

Learning Objectives:
•    Provide the investigator perspective on involving parents and stakeholders in clinical research.
•    Detail examples of how parents and stakeholders have guided Neonatal Seizure Registry research from proposal to dissemination

Dr. Glass is a Professor of Neurology and Pediatrics at University of California, San Francisco. She directs the UCSF Neonatal Neurocritical Care Program and conducts research to improve the lives of newborns with brain injury.

 

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

 


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