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http://hdl.handle.net/2445/108981
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, Michael, 1966- 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 Epidemiologia Medicina interna Inflammation Epidemiology 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: https://doi.org/10.1136/annrheumdis-2016-210092 |
It is part of: | Annals of the Rheumatic Diseases, 2016, vol. 2016 |
URI: | http://hdl.handle.net/2445/108981 |
Related resource: | https://doi.org/10.1136/annrheumdis-2016-210092 |
ISSN: | 0003-4967 |
Appears in Collections: | Articles publicats en revistes (Cirurgia i Especialitats Medicoquirúrgiques) |
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