J 2017

FungiScope™—Global Emerging Fungal Infection Registry

SEIDEL, Danila, Luisa A. DURÁN GRAEFF, Maria J.G.T. VEHRESCHILD, Hilmar WISPLINGHOFF, Maren ZIEGLER et. al.

Basic information

Original name

FungiScope™—Global Emerging Fungal Infection Registry

Authors

SEIDEL, Danila (276 Germany), Luisa A. DURÁN GRAEFF (276 Germany), Maria J.G.T. VEHRESCHILD (276 Germany), Hilmar WISPLINGHOFF (276 Germany), Maren ZIEGLER (276 Germany), Janne J. VEHRESCHILD (276 Germany), Blasius LISS (276 Germany), Axel HAMPRECHT (203 Czech Republic), Philipp KÖHLER (276 Germany), Zdeněk RÁČIL (124 Canada, guarantor, belonging to the institution), Nikolay KLIMKO (643 Russian Federation), Donald C. SHEPPARD (124 Canada), Raoul HERBRECHT (250 France), Anuradha CHOWDHARY (356 India) and Oliver A. CORNELY (276 Germany)

Edition

Mycoses, Hoboken, Wiley-Blackwell, 2017, 0933-7407

Other information

Language

English

Type of outcome

Článek v odborném periodiku

Field of Study

30216 Dermatology and venereal diseases

Country of publisher

United States of America

Confidentiality degree

není předmětem státního či obchodního tajemství

Impact factor

Impact factor: 2.793

RIV identification code

RIV/00216224:14110/17:00097250

Organization unit

Faculty of Medicine

UT WoS

000406076600003

Keywords in English

fungal infection; global cooperation; immunocompromised; orphan disease; registry

Tags

Tags

International impact, Reviewed
Změněno: 20/3/2018 13:57, Soňa Böhmová

Abstract

V originále

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.