NewSTEPs collects data in a centralized and secure online database that can be accessed by authorized users from anywhere, and allow each contributing newborn screening program to explore data to meet local program needs. In addition to the three main types of data collected in the repository (case definitions, quality indicators, state profiles), NewSTEPs has developed resources, reports and data visualizations to assist with data entry and quality improvement.
A set of public health surveillance case definitions has been developed by the newborn screening community to facilitate common classifications for diagnoses across programs for all of the core Recommended Uniform Screening Panel (RUSP) newborn screening conditions. These definitions have been developed through an iterative process by experts in state newborn screening programs, piloted in newborn screening programs and integrated into the NewSTEPs Data Repository. Consensus public health surveillance case definitions for newborn screening disorders will allow for consistent categorization and tracking of short and long-term follow-up of identified newborns at the local, regional and national levels.
Newborn screening quality indicators (QIs) are utilized to provide longitudinal comparisons within a program as well as comparisons to aggregate data across programs. These eight QIs have undergone careful, iterative evaluation by stakeholders to assure agreement on definitions.
State profile data gives an overview of each state newborn screening system, inclusive of disorders screened, policies, adding to the newborn screening panel, fees, program structure, contacts, advisory committee information, information technology support and health information technology elements.
Newborn screening reports give real time snapshots of certain state profile data elements. Current reports include: screened conditions report, screening methodologies and targets report, newborn screening fees report, dried blood spot retention report, courier system report, information management system report, and data retention report.