Using data captured in the CF Foundation Patient Registry Outcomes Research and Public Reporting is the focus of The Dartmouth Institute’s work on behalf of the CF Foundation. The Institute's faculty were the first to reveal the variation in CF care processes and medical outcomes among care centers and continue to lead analyses to develop case-mix adjustment models and understand survival.
Systematically capturing patient and family experiences of care is critical to improve care delivery. The Dartmouth Institute's faculty heads an effort to develop a CF-specific survey to collect data on patients’ and families’ care experiences at pediatric and adult care programs in the U.S. This validated instrument is the first of its kind and is being used as part of the CF Foundation’s center accreditation process.