BACKGROUND: The aim of this study was to record the current status of newborn bloodspot screening (NBS) for CF across Europe and assess performance. METHODS: Survey of representatives of NBS for CF programmes across Europe. Performance was assessed through a framework developed in a previous exercise. RESULTS: In 2022, we identified 22 national and 34 regional programmes in Europe. Barriers to establishing NBS included cost and political inertia. Performance was assessed from 2019 data reported by 21 national and 21 regional programmes. All programmes employed different protocols, with IRT-DNA the most common strategy. Six national and 11 regional programmes did not use DNA analysis. CONCLUSIONS: Integrating DNA analysis into the NBS protocol improves PPV, but at the expense of increased carrier and CFSPID recognition. Some programmes employ strategies to mitigate these outcomes. Programmes should constantly strive to improve performance but large datasets are needed to assess outcomes reliably.

Cystic Fibrosis Department Institute of Mother and Child Warsaw Poland

Department of Experimental Medicine Sapienza University Rome Italy

Department of Paediatric Pulmonology and Allergology Wilhelmina Children's Hospital University Medical Centre Utrecht Utrecht University Utrecht the Netherlands

Department of Women's and Children's Health University of Liverpool United Kingdom

Division of Woman and Child Department of Pediatrics University Hospitals Leuven Leuven Belgium

ECFS NSWG Data Manager Institute of Social and Preventive Medicine and Graduate School for Health Sciences University of Bern Switzerland

Graduate Entry Medical School and Centre for Interventions in Infection Inflammation and Immunity University of Limerick Limerick Ireland

Hospital Necker Enfants Malades AP HP CF centre Université Paris Descartes France and CF referent physician for the French Society of Newborn Screenings

IRCCS Istituto Giannina Gaslini Cystic Fibrosis Center Genoa Italy

Laboratory of genetic epidemiology Research Centre for Medical Genetics Moscow Regional Research and Clinical Institute Moscow Russian Federation

Paediatric Pulmonology Allergology and CF Centre Department of Paediatrics 3 and Translational Lung Research Center German Lung Research Center University Hospital Heidelberg Germany

Paediatric Pulmonology and CF Centre Children's Hospital of Eastern Switzerland St Gallen Switzerland

Pediatric Pulmonology and Cystic Fibrosis Unit Hospital Universitari Vall d´Hebron Barcelona Spain

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