Lay summary
Fetal alcohol spectrum disorder (FASD) is a lifelong disability resulting from prenatal alcohol exposure that can affect physical and cognitive development. Currently, there is no comprehensive New Zealand registry capturing FASD data; in its absence, it is difficult to monitor trends and outcomes, and develop national policy to improve care for individuals living with FASD. A national FASD registry will provide a platform for individuals and families, clinicians, researchers, government and industry to collaborate and advance knowledge and practice for those impacted by FASD. We propose to consult with key-stakeholders on how to develop a scalable and sustainable national FASD registry.