Long-term follow-up data collection and use in state newborn screening programs

Objectives: To describe and analyze the types of data-related policies and practices that currently exist among state newborn screening (NBS) programs in relation to long-term follow-up (LTFU) and oversight for newborns with confirmed disorders. Design: A 19-question online survey. Participants: Thirty-five state NBS programs. Main Outcome Measures: Whether LTFU is performed, collection and use of LTFU data, and variety of LTFU data collected. Results: Survey findings reveal data-related challenges faced by state NBS programs in their ability to perform ongoing oversight, evaluation, and quality assurance with respect to LTFU for newborns with confirmed disorders. Of the NBS programs surveyed, 56% reported collecting no LTFU data. More than two-thirds of state NBS programs surveyed do not use LTFU data at all or use it only minimally. Most programs that collect any LTFU data from providers (physicians, nurses, and allied health professionals) do it through verbal communication or paper forms rather than electronically. Almost half of the programs collecting any LTFU data do so only once a year. A lot of variety exists in the types of LTFU data collected across programs. Most of the 15 programs that reported collecting LTFU data use it to track the clinical outcomes of patients, assess the needs of patients and their families for services, and track and identify individuals lost to follow-up across time. Conclusion: The results generally point to a need for greater alignment of state NBS program data practices and policies with the data requirements for essential public health functions, such as quality assurance, program evaluation, and cost-benefit analysis.