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Title: Development of the autoinflammatory disease damage index (ADDI).
Author: Ter Haar, Nienke M.
Annink, Kim V.
Al-Mayouf, Sulaiman M.
Amaryan, Gayane
Antón López, Jordi
Barron, Karyl
Benseler, Susanne M.
Brogan, Paul
Cantarini, Luca
Cattalini, Marco
Cochino, Alexis-Virgil
Benedetti, Fabrizio de
Dedeoglu, Fatma
Jesus, Adriana A. de
Casa Alberighi, Ornella della
Demirkaya, Erkan
Dolezalova, Pavla
Durrant, Karen L.
Fabio, Giovanna
Gallizzi, Romina
Goldbach-Mansky, Raphaela
Hachulla, Eric
Hentgen, Veronique
Herlin, Troels
Hofer, Michaël
Hoffman, Hal M.
Insalaco, Antonella
Jansson, Annette F.
Kallinich, Tilmann
Koné-Paut, Isabelle
Kozlova, Anna
Kuemmerle-Deschner, Jasmin
Lachmann, Helen J.
Laxer, Ronald M.
Martini, Alberto
Nielsen, Susan
Nikishina, Irina
Ombrello, Amanda K.
Ozen, Seza
Papadopoulou-Alataki, Efimia
Quartier, Pierre
Rigante, Donato
Russo, Ricardo
Simon, Anna
Trachana, Maria
Uziel, Yosef
Ravelli, Angelo
Gattorno, Marco
Frenkel, Joost
Keywords: Inflamació
Medicina interna
Internal medicine
Issue Date: 3-Nov-2016
Publisher: BMJ Publishing Group
Abstract: Objectives Autoinflammatory diseases cause systemic inflammation that can result in damage to multiple organs. A validated instrument is essential to quantify damage in individual patients and to compare disease outcomes in clinical studies. Currently, there is no such tool. Our objective was to develop a common autoin flammatory disease damage index (ADDI) for familial Mediterranean fever, cryopyrin-associated periodic syndromes, tumour necrosis factor receptor- associated periodic fever syndrome and mevalonate kinase de ficiency. Methods We developed the ADDI by consensus building. The top 40 enrollers of patients in the Eurofever Registry and 9 experts from the Americas participated in multiple rounds of online surveys to select items and definitions. Further, 22 (parents of) patients rated damage items and suggested new items. A consensus meeting was held to refine the items and definitions, which were then formally weighted in a scoring system derived using decision-making software, known as 1000minds. Results More than 80% of the experts and patients completed the online surveys. The preliminary ADDI contains 18 items, categorised in the following eight organ systems: reproductive, renal/amyloidosis, developmental, serosal, neurological, ears, ocular and musculoskeletal damage. The categories renal/amyloidosis and neurological damage were assigned the highest number of points, serosal damage the lowest number of points. The involvement of (parents of) patients resulted in the inclusion of, for example, chronic musculoskeletal pain. Conclusions An instrument to measure damage caused by autoinflammatory diseases is developed based on consensus building. Patients fulfilled a significant role in this process.
Note: Reproducció del document publicat a:
It is part of: Annals of the Rheumatic Diseases, 2016, vol. 2016
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ISSN: 0003-4967
Appears in Collections:Articles publicats en revistes (Cirurgia i Especialitats Medicoquirúrgiques)

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