EuPAPNet

The principal gain of our research activity ist to collect demographiocs and clinical data of the patients referring to our institution, in order to create a comprehensive database of our cohort. Actually an european register of patients affected by alveolar proteinosis is lacking . Other countries like USA and Japan are active since many years in this field and presents a national registry for this rare disease.

Beside the epidemiological interests, we store also  biological specimens, like  serum, blood and bronchoalveolar lavage fluid, in a BIOBANK, in order to allow future researches. Our running studies are focusing on the discovery of biomarkers, proteins with diagnostic and prognostic significance that could also provide new non invasive methods of investigation to our patients. 

Concerning the therapy, we are working to establish the role of the whole lung lavage, actually the standard treatment, and its effect on the course of disease. Furthermore we are part of international trials evaluating the efficacy of the promising GM-CSF substitution therapy, for patient refractory to standard tratment.

To all adult patients referring to our institution. we offer the chance to be  followed in the clinical course of disease and to take actively in developing the knowledge of this orphan disease.

Department of  Pneumology/Allergy 

Ruhrlandklinik,

-University Hospital-

Tüschener Weg 40
45239 Essen

Tel 0201 / 433 - 4021
Fax 0201 / 433 - 4029

Germany