Rare invasive fungal diseases (IFD) are challenging for the treating physicians because of their unspecific clinical presentation, as well as the lack of standardised diagnostic and effective treatment strategies. Late onset of treatment and inappropriate medication is associated with high mortality, thus, urging the need for a better understanding of these diseases. The purpose of FungiScope™ is to continuously collect clinical information and specimens to improve the knowledge on epidemiology and eventually improve patient management of these orphan diseases. FungiScope™ was founded in 2003, and today, collaborators from 66 countries support the registry. So far, clinical data of 794 cases have been entered using a web-based approach. Within the growing network of experts, new collaborations developed, leading to several publications of comprehensive analyses of patient subgroups identified from the registry. Data extracted from FungiScope™ have also been used as the sole control group for the approval of a new antifungal drug. Due to the rarity of these diseases, a global registry is an appropriate method of pooling the scarce and scattered information. Joining efforts across medical specialities and geographical borders is key for researching rare IFD. Here, we describe the structure and management of the FungiScope™ registry.

CECAD Cluster of Excellence University of Cologne Cologne Germany

Center for Clinical Trials University Hospital of Cologne Cologne Germany

Department 1 of Internal Medicine University Hospital Cologne Cologne Germany

Department of Clinical Mycology Allergy and Immunology North Western State Medical University Saint Petersburg Russia

Department of Internal Medicine Hematology and Oncology Masaryk University and University Hospital Brno Brno Czech Republic

Department of Medical Mycology Vallabhbhai Patel Chest Institute University of Delhi Delhi India

Department of Oncology and Hematology Hôpitaux Universitaires de Strasbourg and Université de Strasbourg Strasbourg France

Division of Infectious Diseases Departments of Medicine Microbiology and Immunology Research Institute of the McGill University Health Centre Montreal QC Canada

German Centre for Infection Research partner site Bonn Cologne Cologne Germany

HELIOS Klinik Wuppertal Barmen Wuppertal Germany

Institute for Medical Microbiology and Virology Witten Herdecke University Witten Germany

Institute for Medical Microbiology Immunology and Hygiene University of Cologne Cologne Germany

Medical Faculty Center for Integrated Oncology CIO Cologne Bonn University of Cologne Cologne Germany

Wisplinghoff Laboratories Cologne Germany

Citace poskytuje Crossref.org

Invasive Trichoderma spp. infections: clinical presentation and outcome of cases from the literature and the FungiScope® registry

Invasive infections with Purpureocillium lilacinum: clinical characteristics and outcome of 101 cases from FungiScope® and the literature

Saprochaete clavata Invasive Infections - A New Threat to Hematological-Oncological Patients

ECMM CandiReg-A ready to use platform for outbreaks and epidemiological studies