The ERN-LUNG Population Registry: Aims, Software-Implementation and First Results

Abstract

The ERN-LUNG Population Registry is a new European-wide collection of patients with rare lung diseases, allowing patients to register online in the registry. Medical experts can recruit patients in the registry for disease-specific registries and care options. The Population Registry was implemented on the basis of the open source software OSSE and extended by functions for the self-registration of patients. Patients were invited through patient organizations between May and November 2022. 115 patients registered online in the registry, whereas 60 of them provided full data in the registry form. After first months of usage, further dissemination of the registry is necessary to reach more patients, e.g. by recruiting them via medical centres directly. Improvements of the registry should be conducted to achieve a higher number of fully completed forms.

Priorities and barriers for research related to primary ciliary dyskinesia

“…Supported by recent policies, rare lung disease research experienced unprecedented growth through collaborative efforts in Europe and abroad. ERN-LUNG was established in 2017 and focuses on several rare lung diseases [4,5]. At the same time, the European Respiratory Society (ERS) supports several clinical research collaborations for developing large specific rare lung disease networks, including children's interstitial lung disease, alpha-1 antitrypsin deficiency, and primary ciliary dyskinesia (PCD) [6][7][8].…”