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dc.contributor.authorTer Haar, Nienke M.
dc.contributor.authorAnnink, Kim V.
dc.contributor.authorAl-Mayouf, Sulaiman M.
dc.contributor.authorAmaryan, Gayane
dc.contributor.authorAnton, Jordi
dc.contributor.authorBarron, Karyl S.
dc.contributor.authorBenseler, Susanne M.
dc.contributor.authorBrogan, Paul A.
dc.contributor.authorCantarini, Luca
dc.contributor.authorCattalini, Marco
dc.contributor.authorCochino, Alexis-Virgil
dc.contributor.authorDe Benedetti, Fabrizio
dc.contributor.authorDedeoglu, Fatma
dc.contributor.authorDe Jesus, Adriana A.
dc.contributor.authorAlberighi, Ornella Della Casa
dc.contributor.authorDemirkaya, Erkan
dc.contributor.authorDolezalova, Pavla
dc.contributor.authorDurrant, Karen L.
dc.contributor.authorFabio, Giovanna
dc.contributor.authorGallizzi, Romina
dc.contributor.authorGoldbach-Mansky, Raphaela
dc.contributor.authorHachulla, Eric
dc.contributor.authorHentgen, Veronique
dc.contributor.authorHerlin, Troels
dc.contributor.authorHofer, Michael
dc.contributor.authorHoffman, Hal M.
dc.contributor.authorInsalaco, Antonella
dc.contributor.authorJansson, Annette F.
dc.contributor.authorKallinich, Tilmann
dc.contributor.authorKone-Paut, Isabelle
dc.contributor.authorKozlova, Anna
dc.contributor.authorKuemmerle-Deschner, Jasmin B.
dc.contributor.authorLachmann, Helen J.
dc.contributor.authorLaxer, Ronald M.
dc.contributor.authorMartini, Alberto
dc.contributor.authorNielsen, Susan
dc.contributor.authorNikishina, Irina
dc.contributor.authorOmbrello, Amanda K.
dc.contributor.authorOzen, Seza
dc.contributor.authorPapadopoulou-Alataki, Efimia
dc.contributor.authorQuartier, Pierre
dc.contributor.authorRigante, Donato
dc.contributor.authorRusso, Ricardo
dc.contributor.authorSimon, Anna
dc.contributor.authorTrachana, Maria
dc.contributor.authorUziel, Yosef
dc.contributor.authorRavelli, Angelo
dc.contributor.authorGattorno, Marco
dc.contributor.authorFrenkel, Joost
dc.date.accessioned2019-12-10T10:35:49Z
dc.date.available2019-12-10T10:35:49Z
dc.date.issued2017
dc.identifier.issn0003-4967
dc.identifier.urihttps://doi.org/10.1136/annrheumdis-2016-210092
dc.identifier.urihttp://hdl.handle.net/11655/13903
dc.description.abstractObjectives 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 autoinflammatory disease damage index (ADDI) for familial Mediterranean fever, cryopyrin-associated periodic syndromes, tumour necrosis factor receptor-associated periodic fever syndrome and mevalonate kinase deficiency. 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 consensusbuilding. Patients fulfilled a significant role in this process.
dc.language.isoen
dc.publisherBMJ
dc.relation.isversionof10.1136/annrheumdis-2016-210092
dc.rightsinfo:eu-repo/semantics/openAccess
dc.subjectRheumatology
dc.titleDevelopment Of The Autoinflammatory Disease Damage Index (Addi)
dc.typeinfo:eu-repo/semantics/article
dc.relation.journalAnnals Of The Rheumatic Diseases
dc.contributor.departmentÇocuk Sağlığı ve Hastalıkları
dc.identifier.volume76
dc.identifier.issue5
dc.description.indexWoS


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