Building a Newborn Screening Registry

Register to the pre-workshop


This session will provide participants with an overview of the newborn screening system and describe the infrastructure needed to share information across the system. Participants will learn about different types of disease registries in the United States and will discuss the process for developing a disease specific registry, including engaging with relevant stakeholders and identifying common data elements.

Participants of the pre-workshop should bring a copy of their newborn screening dried blood spot collection form. This will facilitate discussions on the common data elements across all forms.

Number of Participants

Maximum number of attendees is 30, on the first-come, first-served basis according to the round of submission.