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

Cystic fibrosis (CF) is a rare inherited disease with an incidence of 1:3357 newborns in Switzerland [1]. In the era of CFTR modulator treatment, pharmacovigilance studies have shifted to confirming results of phase-III studies in real-life scenarios, and patient registries have been recognized as data platforms for real-world evidence. Optimal data quality is a requirement for delivering robust and trustworthy clinical information in this context. This is especially important for rare diseases, as registries can close the gap of lacking large clinical trials due to low patient numbers.

Source: Journal of Cystic Fibrosis - November 22, 2023 Category: Respiratory Medicine Authors: Lara Wolf, Jakob Usemann, Eug énie Collaud, Marie-France Derkenne, Reta Fischer, Maxime Hensen, Michael Hitzler, Markus Hofer, Demet Inci, Sarosh Irani, Kathleen Jahn, Angela Koutsokera, Rachel Kusche, Thomas Kurowski, Philipp Latzin, Dagmar Lin, Laurenc Tags: Original Article Source Type: research