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

Purpose: 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. Methods: 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. Results: 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. Conclusion: 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. Genet Med 2010:12(12):S242-S250.