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@article{1386374,
author = {Seidel, Danila and Durán Graeff, Luisa A. and Vehreschild, Maria J.G.T. and Wisplinghoff, Hilmar and Ziegler, Maren and Vehreschild, Janne J. and Liss, Blasius and Hamprecht, Axel and Köhler, Philipp and Ráčil, Zdeněk and Klimko, Nikolay and Sheppard, Donald C. and Herbrecht, Raoul and Chowdhary, Anuradha and Cornely, Oliver A.},
article_location = {Hoboken},
article_number = {8},
doi = {http://dx.doi.org/10.1111/myc.12631},
keywords = {fungal infection; global cooperation; immunocompromised; orphan disease; registry},
language = {eng},
issn = {0933-7407},
journal = {Mycoses},
title = {FungiScope™—Global Emerging Fungal Infection Registry},
volume = {60},
year = {2017}
}
TY - JOUR
ID - 1386374
AU - Seidel, Danila - Durán Graeff, Luisa A. - Vehreschild, Maria J.G.T. - Wisplinghoff, Hilmar - Ziegler, Maren - Vehreschild, Janne J. - Liss, Blasius - Hamprecht, Axel - Köhler, Philipp - Ráčil, Zdeněk - Klimko, Nikolay - Sheppard, Donald C. - Herbrecht, Raoul - Chowdhary, Anuradha - Cornely, Oliver A.
PY - 2017
TI - FungiScope™—Global Emerging Fungal Infection Registry
JF - Mycoses
VL - 60
IS - 8
SP - 508-516
EP - 508-516
PB - Wiley-Blackwell
SN - 09337407
KW - fungal infection
KW - global cooperation
KW - immunocompromised
KW - orphan disease
KW - registry
N2 - 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.
ER -
SEIDEL, Danila, Luisa A. DURÁN GRAEFF, Maria J.G.T. VEHRESCHILD, Hilmar WISPLINGHOFF, Maren ZIEGLER, Janne J. VEHRESCHILD, Blasius LISS, Axel HAMPRECHT, Philipp KÖHLER, Zdeněk RÁČIL, Nikolay KLIMKO, Donald C. SHEPPARD, Raoul HERBRECHT, Anuradha CHOWDHARY and Oliver A. CORNELY. FungiScope™—Global Emerging Fungal Infection Registry. \textit{Mycoses}. Hoboken: Wiley-Blackwell, 2017, vol.~60, No~8, p.~508-516. ISSN~0933-7407. Available from: https://dx.doi.org/10.1111/myc.12631.
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