FungiScope(™) -Global Emerging Fungal Infection Registry.
Fiche publication
Date publication
août 2017
Journal
Mycoses
Auteurs
Membres identifiés du Cancéropôle Est :
Pr HERBRECHT Raoul
Tous les auteurs :
Seidel D, Durán Graeff LA, Vehreschild MJGT, Wisplinghoff H, Ziegler M, Vehreschild JJ, Liss B, Hamprecht A, Köhler P, Racil Z, Klimko N, Sheppard DC, Herbrecht R, Chowdhary A, Cornely OA, FungiScope Group
Lien Pubmed
Résumé
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.
Mots clés
fungal infection, global cooperation, immunocompromised, orphan disease, registry
Référence
Mycoses. 2017 Aug;60(8):508-516