The context and approach for the California newborn screening short- and long-term follow-up data system: preliminary findings.

Abstract

State newborn screening programs are designed to prevent morbidity and mortality from hereditary disorders through early detection and ongoing disease management. These programs have traditionally focused on short-term follow-up. However, capturing data on the long-term follow-up process is emerging as a new priority. Long-term follow-up data can be used to assess the accessibility, continuity, and quality of care provided to these children. The California Newborn Screening Program uses a Web-based data collection system for short- and long-term follow-up. This article provides a description of the follow-up data collection system in addition to preliminary findings to demonstrate the efficacy of the California data collection approach. A preliminary analysis of short-term follow-up data collected from July 7, 2005, through April 30, 2009, and a preliminary analysis of long-term follow-up data collected from July 1, 2007, through April 30, 2009. A majority of children are able to access ongoing care through age 5 years. The majority also have positive health outcomes at each year of follow-up. California's short- and long-term data collection system can serve as a model for other states interested in implementing a comprehensive Newborn Screening Program follow-up data system.