Parents are the voice of newborns – yet their role in neonatal research has often been overlooked. At GFCNI, we believe meaningful collaboration between researchers and parent representatives is essential to advancing newborn health. Our Position Paper on parent involvement in neonatal research highlights the challenges, gaps, and opportunities in fostering true partnerships.

Developed in collaboration with patient and parent organizations as well as experts, this paper outlines principles for meaningful engagement, ensuring parents are active partners throughout the research process – from setting priorities to shaping outcomes. It also provides guidance for researchers and policymakers looking to integrate the parent perspective effectively.

This paper remains as relevant today as when it was first published. Explore it to learn how we can work together to make neonatal research more inclusive, impactful, and patient-centered.