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Development of the autoinflammatory disease damage index (ADDI)
NM. Ter Haar, KV. Annink, SM. Al-Mayouf, G. Amaryan, J. Anton, KS. Barron, SM. Benseler, PA. Brogan, L. Cantarini, M. Cattalini, AV. Cochino, F. De Benedetti, F. Dedeoglu, AA. De Jesus, O. Della Casa Alberighi, E. Demirkaya, P. Dolezalova, KL....
Jazyk angličtina Země Anglie, Velká Británie
Typ dokumentu konsensus - konference, časopisecké články
NLK
ProQuest Central
od 1939-01-01 do Před 6 měsíci
Health & Medicine (ProQuest)
od 1939-01-01 do Před 6 měsíci
Family Health Database (ProQuest)
od 1939-01-01 do Před 6 měsíci
ROAD: Directory of Open Access Scholarly Resources
- MeSH
- dědičné zánětlivé autoimunitní nemoci komplikace MeSH
- dítě MeSH
- dospělí MeSH
- horečka komplikace MeSH
- konsensus MeSH
- lidé středního věku MeSH
- lidé MeSH
- mladiství MeSH
- mladý dospělý MeSH
- předškolní dítě MeSH
- přehledová literatura jako téma MeSH
- průzkumy a dotazníky MeSH
- senioři MeSH
- stupeň závažnosti nemoci * MeSH
- Check Tag
- dítě MeSH
- dospělí MeSH
- lidé středního věku MeSH
- lidé MeSH
- mladiství MeSH
- mladý dospělý MeSH
- předškolní dítě MeSH
- senioři MeSH
- Publikační typ
- časopisecké články MeSH
- konsensus - konference MeSH
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 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 consensus building. Patients fulfilled a significant role in this process.
4th Department of Paediatrics Aristotle University of Thessaloniki Thessaloniki Greece
Autoinflammatory Alliance San Fransisco USA
Département de Médecine Interne et Immunologie Clinique Université de Lille Lille France
Department of Paediatric Rheumatology Gulhane Military Medical Faculty Ankara Turkey
Department of Paediatric Rheumatology Hacettepe University Ankara Turkey
Department of Paediatrics Aarhus University Hospital Aarhus Denmark
Department of Paediatrics and Department of Rheumatology Alberta Children's Hospital Calgary Canada
Department of Paediatrics King Faisal Specialist Hospital and Research Centre Riyadh Saudi Arabia
Department of Paediatrics Rheumatology AOU G Martino Messina Italy
Department of Paediatrics University Medical Centre Utrecht Utrecht The Netherlands
Department of Paediatrics University of California San Diego USA
Dipartimento di Medicina Pediatrica IRCCS Ospedale Pediatrico Bambino Gesù Rome Italy
Direzione Scientifica G Gaslini Institute Genova Italy
Division of Medicine University College London London UK
Division of Rheumatology Ospedale Pediatrico Bambino Gesù Rome Italy
Institution Università degli Studi di Genova and G Gaslini Institute Genova Italy
Paediatric Clinic University of Brescia and Spedali Civili di Brescia Brescia Italy
Paediatric Rheumatology unit 4272 Rigshospitalet Copenhagen Denmark
Paediatric Rheumatology Unit Hospital Sant Joan de Déu Barcelona Spain
Reference centre for autoinflammatory diseases Versailles Hospital Le Chesnay France
Servicio de Inmunología y Reumatología Hospital de Pediatría Garrahan Buenos Aires Argentina
Translational Autoinflammatory Disease Section NIAID National Institutes of Health Bethesda USA
UOC Pediatria 2 G Gaslini Institute Genova Italy
UOSD Farmacologia Clinica e Clinical Trial Scientific Direction G Gaslini Institute Genova Italy
Citace poskytuje Crossref.org
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- $a Ter Haar, Nienke M $u Laboratory for Translational Immunology, University Medical Centre Utrecht, Utrecht, The Netherlands. Department of Paediatric Immunology, University Medical Centre Utrecht, Utrecht, The Netherlands.
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- $a Development of the autoinflammatory disease damage index (ADDI) / $c NM. Ter Haar, KV. Annink, SM. Al-Mayouf, G. Amaryan, J. Anton, KS. Barron, SM. Benseler, PA. Brogan, L. Cantarini, M. Cattalini, AV. Cochino, F. De Benedetti, F. Dedeoglu, AA. De Jesus, O. Della Casa Alberighi, E. Demirkaya, P. Dolezalova, KL. Durrant, G. Fabio, R. Gallizzi, R. Goldbach-Mansky, E. Hachulla, V. Hentgen, T. Herlin, M. Hofer, HM. Hoffman, A. Insalaco, AF. Jansson, T. Kallinich, I. Koné-Paut, A. Kozlova, JB. Kuemmerle-Deschner, HJ. Lachmann, RM. Laxer, A. Martini, S. Nielsen, I. Nikishina, AK. Ombrello, S. Ozen, E. Papadopoulou-Alataki, P. Quartier, D. Rigante, R. Russo, A. Simon, M. Trachana, Y. Uziel, A. Ravelli, M. Gattorno, J. Frenkel,
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- $a 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 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 consensus building. Patients fulfilled a significant role in this process.
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