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.

Základní údaje

Originální název

FungiScope™—Global Emerging Fungal Infection Registry

Autoři

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 a Oliver A. CORNELY

Vydání

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

Další údaje

Jazyk

angličtina

Typ výsledku

Článek v odborném periodiku

Obor

30216 Dermatology and venereal diseases

Stát vydavatele

Spojené státy

Utajení

není předmětem státního či obchodního tajemství

Impakt faktor

Impact factor: 2.793

Kód RIV

RIV/00216224:14110/17:00097250

Organizační jednotka

Lékařská fakulta

UT WoS

000406076600003

EID Scopus

2-s2.0-85024908436

Klíčová slova anglicky

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

Štítky

Příznaky

Mezinárodní význam, Recenzováno
Změněno: 20. 3. 2018 13:57, Soňa Böhmová

Anotace

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.