The European Cystic Fibrosis Society Patient Registry - Epidemiology

Relevant Publications

Cystic fibrosis in Iceland and the high prevalence of the N1303K variant.

Issue Release: 2024

Towards a Standardized Classification of the Hepatobiliary Manifestations in Cystic Fibrosis (CFHBI): A Joint ESPGHAN/NASPGHAN Position Paper.

Issue Release: 2024

Cystic fibrosis in Europe: improved lung function & longevity: reasons for cautious optimism, but challenges remain.

Issue Release: 2024

Effectiveness of lumacaftor/ivacaftor initiation in children with cystic fibrosis aged 2 through 5 years on disease progression: Interim results from an ongoing registry-based study.

Issue Release: 2024

Exploring Turkey\'s mosaic of novel variants and complex alleles in cystic fibrosis genetics.

Issue Release: 2024

Nonsense mutations accelerate lung disease and decrease survival of cystic fibrosis children.

Issue Release: 2023

A multinational report on SARS-COV-2 infection outcomes in people with CF and Aspergillus infection or ABPA.

Issue Release: 2023

Association of Oxygen Therapy with the Natural Disease Progression of Cystic Fibrosis: A Multi-State Model of the European Cystic Fibrosis Society Patient Registry.

Issue Release: 2023

Risk factors for forced expiratory volume in 1 s decline in European patients with cystic fibrosis: data from the European Cystic Fibrosis Society Patient Registry.

Issue Release: 2023

Data accuracy, consistency and completeness of the national Swiss cystic fibrosis patient registry: Lessons from an ECFSPR data quality project.

Issue Release: 2023

Disease severity of people with cystic fibrosis carrying residual function mutations: Data from the ECFS Patient Registry.

Issue Release: 2022

Clinical outcomes associated with Achromobacter species infection in people with cystic fibrosis.

Issue Release: 2022

Geographic distribution and phenotype of European people with cystic fibrosis carrying A1006E mutation.

Issue Release: 2022

Incidence of SARS-CoV-2 in people with cystic fibrosis in Europe between February and June 2020.

Issue Release: 2021

Factors for severe outcomes following SARS-CoV-2 infection in people with cystic fibrosis in Europe.

Issue Release: 2021

Survival estimates in European cystic fibrosis patients and the impact of socioeconomic factors: a retrospective registry cohort study.

Issue Release: 2021

Impact of SARS-CoV-2 infection in patients with cystic fibrosis in Spain: Incidence and results of the national CF-COVID19-Spain survey.

Issue Release: 2020

The c.3140-26A>G Variant of the CFTR Gene in Homozygous State Causes Mild Cystic Fibrosis - Overview of Longitudinal Clinical Data of the Patient Managed in our CF Center and Review of the Literature.

Issue Release: 2020

Characteristics of cystic fibrosis-related diabetes: Data from two different sources the European cystic fibrosis society patient registry and German/Austrian diabetes prospective follow-up registry.

Issue Release: 2019

Cystic fibrosis related diabetes in Europe: Prevalence, risk factors and outcome; Olesen et al.

Issue Release: 2019

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The European Cystic Fibrosis Society Patient Registry - Epidemiology

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