(93) Developing Individualized State-Level Reports for the Evaluation of the CF Newborn Screening: From Specimen Collection to Follow-up Over 10 Years

Background: The end of 2019 marked the 10-year anniversary of nationwide newborn screening (NBS) for cystic fibrosis in the United States. While data from the Cystic Fibrosis Foundation Patient Registry (CFFPR) have shown the expected benefits of newborn screening, variations in the CF newborn screening system exist at the state- and CF center-level. The CF 10-Year Evaluation Project, funded by the Cystic Fibrosis Foundation (MCCOLL19QI0), was designed to further understand this variation and its impacts. To provide opportunities for data-driven quality improvement conversations within states, we developed individualized reports for state NBS programs and CF Centers to visualize screening data in relation to CF outcomes over the last 10 years.

Methods: All state NBS programs were contacted with an offer to participate and agree to use of their data submitted to the Newborn Screening Technical assistance and Evaluation Program (NewSTEPs), a program of the Association of Public Health Laboratories. This included aggregate quality indicator data and de-identified patient-level data. De-identified diagnostic and outcome data was also acquired from the Cystic Fibrosis Foundation Patient Registry (CFFPR). R Studio was used to analyze the data and create descriptive visualizations. An automated process was also developed in R Studio to generate individualized state reports using a template designed in Microsoft Word. An initial draft of these reports was distributed to participating NBS programs by email. NBS program recipients were invited to attend two virtual sessions where they were asked to provide feedback on the usefulness of the measures and the clarity of the reporting.

Results: Thirty-seven states agreed to the use of their data. The first iteration of the state-level CF 10-year Evaluation reports featured descriptive statistics under four sections: Summary of Diagnosed Cases, Timeliness, Diagnostic Testing, and Demographics. The report included figures which compared the individual states’ data with that of the aggregate U.S. All participating NBS programs were solicited for feedback, and 23/37 responded to our request by attending a virtual feedback session and/or submitting their feedback in writing. Suggested edits were compiled and analyzed for feasibility. Driven by this feedback, a revised CF 10-Year report has been developed and is currently undergoing an internal review before dissemination. The reports depict changes in timeliness of the CF screening process from specimen collection and result reporting to first CF care episode and diagnosis (Figure 1). Further, the number of infants identified are reported by birth year, as reported to both the CFF and NewSTEPs. From the laboratory, the percent of unacceptable specimens identified are reported. Future iterations can include early outcomes from CF Centers.

Conclusions: The final CF 10-Year Evaluation reports will be shared with the state NBS programs, who will take responsibility for sharing it with relevant CF centers based on legal agreements with NewSTEPs prohibiting our direct sharing of reports with CF centers. Automation allows the reports to be updated with additional data entered into the CFFPR or NewSTEPs repository. By providing these reports, we hope to inform data-driven quality improvement efforts, which we will support by engaging personnel from both state NBS programs and CF Care Centers in quality improvement initiatives.

Acknowledgements: This work was supported by the Cystic Fibrosis Foundation (MCCOLL19QI0).QI0)

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