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

Area of Science:

• Pulmonology
• Medical Informatics
• Rare Diseases

Background:

• The European rare respiratory disease network (ERN-LUNG) established a population registry for rare lung diseases.
• Online patient self-registration was implemented using open-source software (OSSE).

Purpose of the Study:

• To assess the initial uptake and identify areas for improvement in the ERN-LUNG Population Registry.
• To facilitate patient recruitment for disease-specific registries and care options.

Main Methods:

• Patients were invited to register online via patient organizations from May to November 2022.
• The registry utilized OSSE software with added self-registration functionalities.

Main Results:

• 115 patients registered online, with 60 completing the full registry form.
• Initial usage highlighted the need for broader dissemination and improved data completion rates.

Conclusions:

• The ERN-LUNG Population Registry shows initial promise but requires enhanced outreach strategies, including direct recruitment via medical centers.
• Further improvements are necessary to maximize patient enrollment and the quality of data collected for rare lung diseases.