Development of the autoinflammatory disease damage index (ADDI)

Nienke M. ter Haar; K. Annink; Sulaiman Al-Mayouf; Gayane Amaryan; Jordi Anton; Karyl S. Barron; Susanne M. Benseler; Paul Brogan; L. Cantarini; Marco Cattalini; A. V. Cochino; Fabrizio De Benedetti; Fatma Dedeoglu; Adriana A. De Jesus; Ornella Della Casa Alberighi; Erkan Demirkaya; Pavla Dolezalova; K. Durrant; Giovanna Fabio; Romina Gallizzi; R. Goldbach-Mansky; E. Hachulla; Veronique Hentgen; Troels Herlin; M. Hofer; H. Hoffman; Antonella Insalaco; Annette Jansson; Tilmann Kallinich; Isabelle Koné-Paut; Anna Kozlova; Jasmin Kuemmerle-Deschner; H. Lachmann; Ronald M. Laxer; Alberto Martini; Susan Nielsen; Irina Nikishina; Amanda Ombrello; Seza Ozen; Efimia Papadopoulou-Alataki; Pierre Quartier; D. Rigante; Ricardo Russo; A. Simon; Maria Trachana; Yosef Uziel; Angelo Ravelli; Marco Gattorno; J. Frenkel

doi:10.1136/annrheumdis-2016-210092

Development of the autoinflammatory disease damage index (ADDI)

Nienke M. ter Haar, K. Annink, Sulaiman Al-Mayouf, Gayane Amaryan, Jordi Anton, Karyl S. Barron, Susanne M. Benseler, Paul Brogan, L. Cantarini, Marco Cattalini, A. V. Cochino, Fabrizio De Benedetti, Fatma Dedeoglu, Adriana A. De Jesus, Ornella Della Casa Alberighi, Erkan Demirkaya, Pavla Dolezalova, K. Durrant, Giovanna Fabio, Romina GallizziR. Goldbach-Mansky, E. Hachulla, Veronique Hentgen, Troels Herlin, M. Hofer, H. Hoffman, Antonella Insalaco, Annette Jansson, Tilmann Kallinich, Isabelle Koné-Paut, Anna Kozlova, Jasmin Kuemmerle-Deschner, H. Lachmann, Ronald M. Laxer, Alberto Martini, Susan Nielsen, Irina Nikishina, Amanda Ombrello, Seza Ozen, Efimia Papadopoulou-Alataki, Pierre Quartier, D. Rigante, Ricardo Russo, A. Simon, Maria Trachana, Yosef Uziel, Angelo Ravelli, Marco Gattorno, J. Frenkel

Research output: Contribution to journal › Article › peer-review

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 autoinflammatory disease damage index (ADDI) for familial Mediterranean fever, cryopyrin-associated periodic syndromes, tumour necrosis factor receptorassociated 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.

Original language	English
Journal	Annals of the Rheumatic Diseases
DOIs	https://doi.org/10.1136/annrheumdis-2016-210092
Publication status	Accepted/In press - Nov 3 2016

ASJC Scopus subject areas

Immunology and Allergy
Rheumatology
Immunology
Biochemistry, Genetics and Molecular Biology(all)

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ter Haar, N. M., Annink, K., Al-Mayouf, S., Amaryan, G., Anton, J., Barron, K. S., Benseler, S. M., Brogan, P., Cantarini, L., Cattalini, M., Cochino, A. V., De Benedetti, F., Dedeoglu, F., De Jesus, A. A., Alberighi, O. D. C., Demirkaya, E., Dolezalova, P., Durrant, K., Fabio, G., ... Frenkel, J. (Accepted/In press). Development of the autoinflammatory disease damage index (ADDI). Annals of the Rheumatic Diseases. https://doi.org/10.1136/annrheumdis-2016-210092

Development of the autoinflammatory disease damage index (ADDI). / ter Haar, Nienke M.; Annink, K.; Al-Mayouf, Sulaiman; Amaryan, Gayane; Anton, Jordi; Barron, Karyl S.; Benseler, Susanne M.; Brogan, Paul; Cantarini, L.; Cattalini, Marco; Cochino, A. V.; De Benedetti, Fabrizio; Dedeoglu, Fatma; De Jesus, Adriana A.; Alberighi, Ornella Della Casa; Demirkaya, Erkan; Dolezalova, Pavla; Durrant, K.; Fabio, Giovanna; Gallizzi, Romina; Goldbach-Mansky, R.; Hachulla, E.; Hentgen, Veronique; Herlin, Troels; Hofer, M.; Hoffman, H.; Insalaco, Antonella; Jansson, Annette; Kallinich, Tilmann; Koné-Paut, Isabelle; Kozlova, Anna; Kuemmerle-Deschner, Jasmin; Lachmann, H.; Laxer, Ronald M.; Martini, Alberto; Nielsen, Susan; Nikishina, Irina; Ombrello, Amanda; Ozen, Seza; Papadopoulou-Alataki, Efimia; Quartier, Pierre; Rigante, D.; Russo, Ricardo; Simon, A.; Trachana, Maria; Uziel, Yosef; Ravelli, Angelo ; Gattorno, Marco; Frenkel, J.

In: Annals of the Rheumatic Diseases, 03.11.2016.

Research output: Contribution to journal › Article › peer-review

ter Haar, NM, Annink, K, Al-Mayouf, S, Amaryan, G, Anton, J, Barron, KS, Benseler, SM, Brogan, P, Cantarini, L, Cattalini, M, Cochino, AV, De Benedetti, F, Dedeoglu, F, De Jesus, AA, Alberighi, ODC, Demirkaya, E, Dolezalova, P, Durrant, K, Fabio, G, Gallizzi, R, Goldbach-Mansky, R, Hachulla, E, Hentgen, V, Herlin, T, Hofer, M, Hoffman, H, Insalaco, A, Jansson, A, Kallinich, T, Koné-Paut, I, Kozlova, A, Kuemmerle-Deschner, J, Lachmann, H, Laxer, RM, Martini, A, Nielsen, S, Nikishina, I, Ombrello, A, Ozen, S, Papadopoulou-Alataki, E, Quartier, P, Rigante, D, Russo, R, Simon, A, Trachana, M, Uziel, Y, Ravelli, A , Gattorno, M & Frenkel, J 2016, 'Development of the autoinflammatory disease damage index (ADDI)', Annals of the Rheumatic Diseases. https://doi.org/10.1136/annrheumdis-2016-210092

ter Haar, Nienke M. ; Annink, K. ; Al-Mayouf, Sulaiman ; Amaryan, Gayane ; Anton, Jordi ; Barron, Karyl S. ; Benseler, Susanne M. ; Brogan, Paul ; Cantarini, L. ; Cattalini, Marco ; Cochino, A. V. ; De Benedetti, Fabrizio ; Dedeoglu, Fatma ; De Jesus, Adriana A. ; Alberighi, Ornella Della Casa ; Demirkaya, Erkan ; Dolezalova, Pavla ; Durrant, K. ; Fabio, Giovanna ; Gallizzi, Romina ; Goldbach-Mansky, R. ; Hachulla, E. ; Hentgen, Veronique ; Herlin, Troels ; Hofer, M. ; Hoffman, H. ; Insalaco, Antonella ; Jansson, Annette ; Kallinich, Tilmann ; Koné-Paut, Isabelle ; Kozlova, Anna ; Kuemmerle-Deschner, Jasmin ; Lachmann, H. ; Laxer, Ronald M. ; Martini, Alberto ; Nielsen, Susan ; Nikishina, Irina ; Ombrello, Amanda ; Ozen, Seza ; Papadopoulou-Alataki, Efimia ; Quartier, Pierre ; Rigante, D. ; Russo, Ricardo ; Simon, A. ; Trachana, Maria ; Uziel, Yosef ; Ravelli, Angelo ; Gattorno, Marco ; Frenkel, J. / Development of the autoinflammatory disease damage index (ADDI). In: Annals of the Rheumatic Diseases. 2016.

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title = "Development of the autoinflammatory disease damage index (ADDI)",

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 autoinflammatory disease damage index (ADDI) for familial Mediterranean fever, cryopyrin-associated periodic syndromes, tumour necrosis factor receptorassociated 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.",

author = "{ter Haar}, {Nienke M.} and K. Annink and Sulaiman Al-Mayouf and Gayane Amaryan and Jordi Anton and Barron, {Karyl S.} and Benseler, {Susanne M.} and Paul Brogan and L. Cantarini and Marco Cattalini and Cochino, {A. V.} and {De Benedetti}, Fabrizio and Fatma Dedeoglu and {De Jesus}, {Adriana A.} and Alberighi, {Ornella Della Casa} and Erkan Demirkaya and Pavla Dolezalova and K. Durrant and Giovanna Fabio and Romina Gallizzi and R. Goldbach-Mansky and E. Hachulla and Veronique Hentgen and Troels Herlin and M. Hofer and H. Hoffman and Antonella Insalaco and Annette Jansson and Tilmann Kallinich and Isabelle Kon{\'e}-Paut and Anna Kozlova and Jasmin Kuemmerle-Deschner and H. Lachmann and Laxer, {Ronald M.} and Alberto Martini and Susan Nielsen and Irina Nikishina and Amanda Ombrello and Seza Ozen and Efimia Papadopoulou-Alataki and Pierre Quartier and D. Rigante and Ricardo Russo and A. Simon and Maria Trachana and Yosef Uziel and Angelo Ravelli and Marco Gattorno and J. Frenkel",

year = "2016",

month = nov,

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doi = "10.1136/annrheumdis-2016-210092",

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T1 - Development of the autoinflammatory disease damage index (ADDI)

AU - ter Haar, Nienke M.

AU - Annink, K.

AU - Al-Mayouf, Sulaiman

AU - Amaryan, Gayane

AU - Anton, Jordi

AU - Barron, Karyl S.

AU - Benseler, Susanne M.

AU - Brogan, Paul

AU - Cantarini, L.

AU - Cattalini, Marco

AU - Cochino, A. V.

AU - De Benedetti, Fabrizio

AU - Dedeoglu, Fatma

AU - De Jesus, Adriana A.

AU - Alberighi, Ornella Della Casa

AU - Demirkaya, Erkan

AU - Dolezalova, Pavla

AU - Durrant, K.

AU - Fabio, Giovanna

AU - Gallizzi, Romina

AU - Goldbach-Mansky, R.

AU - Hachulla, E.

AU - Hentgen, Veronique

AU - Herlin, Troels

AU - Hofer, M.

AU - Hoffman, H.

AU - Insalaco, Antonella

AU - Jansson, Annette

AU - Kallinich, Tilmann

AU - Koné-Paut, Isabelle

AU - Kozlova, Anna

AU - Kuemmerle-Deschner, Jasmin

AU - Lachmann, H.

AU - Laxer, Ronald M.

AU - Martini, Alberto

AU - Nielsen, Susan

AU - Nikishina, Irina

AU - Ombrello, Amanda

AU - Ozen, Seza

AU - Papadopoulou-Alataki, Efimia

AU - Quartier, Pierre

AU - Rigante, D.

AU - Russo, Ricardo

AU - Simon, A.

AU - Trachana, Maria

AU - Uziel, Yosef

AU - Ravelli, Angelo

AU - Gattorno, Marco

AU - Frenkel, J.

PY - 2016/11/3

Y1 - 2016/11/3

N2 - 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 receptorassociated 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.

AB - 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 receptorassociated 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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