Parent Partner Advisory Panel
From the beginning, NSR has included both clinicians and Parent Partners, who represent the interests of families with children who have experienced neonatal seizures. The Parent Panel is comprised of parents representing each study site as well as parents from our community partners.
How Parents and Researchers Work Together at NSR:
Over the past decade, the Neonatal Seizure Registry has shown that authentic and sustained family partnership is vital for advancing neonatal and pediatric research. Our collaborative, nonhierarchical model is founded on shared leadership, shared purpose, and mutual learning. More than a dozen parents recruited from our study sites and three partner advocacy organizations meet monthly alongside of our research team.
At NSR, we position parents and families as partners rather than advisors. Parents and families lived experiences shape the research questions we ask, how we design our studies, how we interpret the findings, and how results are disseminated to improve awareness and care. Our approach to partnering with parents and families is built on:
🤝 Trust and Respect – We intentionally build psychological safety where both parents and researchers can share lived experiences and insights.
🔄 Co-Production and Leadership – Parents are collaborators from identifying research priorities and study design through dissemination and helping define future research directions.
💜 Sustained Engagement – NSR has established a long standing community of committed parents, clinicians, and researchers who grow together over time. The relationship building, continuity, and shared accountability are core to our success.
⭐️ Impact – This model has led to more relevant research questions, increased recruitment and retention, more equitable practices, and improved outcome measures that reflect what mattered most to families.
This collaboration is key in shaping NSR's research and impact.
Read our paper to learn more about essential contributions of Parent Advisors to the NSR: Authentic and Sustained Family Partnership in Neonatal and Pediatric Research
Meet Our Community Partners
Casey’s Circle is a nonprofit dedicated to helping families of children with special needs find ways for their kids to be kids first – patients later.
Hand to Hold helps families before, during, and after a NICU stay. Hand to Hold focuses our support, resources, and programs around four central strengths:
- Peer Support from Trained, Supervised NICU Graduate Parents
- Whole Family Care (including Siblings and Grandparents)
- Psychosocial and Emotional Support
- NICU and Beyond: Antepartum through Childhood
Hope for HIE is a global community and non-profit dedicated to improving the quality of life for children and famlies affected by Hypoxic Ischemic Encephalopathy (HIE) through developing more resources, education and support for families.