As a guest user you are not logged in or recognized by your IP address. You have
access to the Front Matter, Abstracts, Author Index, Subject Index and the full
text of Open Access publications.
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.
This website uses cookies
We use cookies to provide you with the best possible experience. They also allow us to analyze user behavior in order to constantly improve the website for you. Info about the privacy policy of IOS Press.
This website uses cookies
We use cookies to provide you with the best possible experience. They also allow us to analyze user behavior in order to constantly improve the website for you. Info about the privacy policy of IOS Press.