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.
- Newborn Screening Information Infrastructure, Click here to download the presentation
- NewSTEPs (Newborn Screening, Technical assistance and Evaluation Program) – NewSTEPs is a national newborn screening resource center designed to provide data, technical assistance and training to newborn screening programs and assist states with quality improvement initiatives.
- LPDR (The Longitudinal Pediatric Data Resource of the Newborn Screening Translation Research Network) – Enables clinicians, researchers, parents and patients to enter health information in a secure, centralized system
- Hemoglobinopathies: Current Practices for Screening, Confirmation and Follow-up