The Cystic Fibrosis Foundation Patient Registry - Epidemiology

Relevant Publications

Sex differences persist after treatment with ivacaftor in people with cystic fibrosis.

Issue Release: 2024

Heterogeneity of CFTR modulator-induced sweat chloride concentrations in people with cystic fibrosis.

Issue Release: 2024

A Retrospective, Longitudinal Registry Study on the Long-Term Durability of Ivacaftor Treatment in People with Cystic Fibrosis.

Issue Release: 2024

Clinical outcomes at 9-10 years of age in children born with cystic fibrosis transmembrane conductance regulator related metabolic syndrome.

Issue Release: 2024

The impact of switching to race-neutral reference equations on FEV percent predicted among people with cystic fibrosis.

Issue Release: 2024

Impact of age at ivacaftor initiation on pulmonary outcomes among people with cystic fibrosis.

Issue Release: 2024

Long-term impact of ivacaftor on mortality rate and health outcomes in people with cystic fibrosis.

Issue Release: 2024

Predicting lung function decline in cystic fibrosis: the impact of initiating ivacaftor therapy.

Issue Release: 2024

Evaluating precision medicine tools in cystic fibrosis for racial and ethnic fairness.

Issue Release: 2024

Real-world impact of ivacaftor in people with cystic fibrosis and select ivacaftor-responsive mutations.

Issue Release: 2024

Characteristics of individuals with cystic fibrosis in the United States ineligible for ivacaftor and elexacaftor/tezacaftor/ivacaftor.

Issue Release: 2024

Early life growth trajectories in cystic fibrosis are associated with lung function at age six.

Issue Release: 2023

Effect of Hypertonic Saline on Lung Function as Add-On Treatment in People with Cystic Fibrosis Receiving Dornase-alfa: A Cystic Fibrosis Foundation Patient Registry Analysis.

Issue Release: 2023

Antibiotic Regimen Changes During Cystic Fibrosis Pediatric Pulmonary Exacerbation Treatment.

Issue Release: 2023

Incidence of fibrosing colonopathy with pancreatic enzyme replacement therapy in patients with cystic fibrosis.

Issue Release: 2023

Predictors of Transition Outcomes in Cystic Fibrosis: Analysis of National Patient Registry and CF RISE data.

Issue Release: 2023

Cost burden among the CF population in the United States: A focus on debt, food insecurity, housing and health services.

Issue Release: 2023

Cystic fibrosis prevalence in the United States and participation in the Cystic Fibrosis Foundation Patient Registry in 2020.

Issue Release: 2023

The risk of pulmonary NTM infections and water-quality constituents among persons with cystic fibrosis in the United States, 2010-2019.

Issue Release: 2023

Multilevel joint model of longitudinal continuous and binary outcomes for hierarchically structured data.

Issue Release: 2023

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