6 research outputs found
Proposal for a definition for response to treatment, inactive disease and damage for JIA associated uveitis based on the validation of a uveitis related JIA outcome measures from the Multinational Interdisciplinary Working Group for Uveitis in Childhood (MIWGUC)
- Author
- Angeles-Han Sheila T.
- Anton Jordi
- Bangsgaard Regitze
- Bou Torrent Rosa
- Brumm Gabriele
- Calzada Joan
- Constantin Tamas
- de Boer Joke
- DeLibero Cinzia
- Diaz Jesus
- Edelsten Clive
- Foeldvari Ivan
- Garcia de Vicuna Carmen
- Gerloni Valeria Maria
- Guedes Margarida
- Heiligenhaus Arnd
- Klotsche Jens
- Kotaniemi Kaisu
- Leinonen Sanna
- Minden Kirsten
- Miranda Vasco
- Miserocchi Elisabetta
- Nielsen Susan
- Niewerth Martina
- Pontikaki Irene
- Simonini Gabriele
- Yeh Steven
- Zilhao Carla
- Publication venue
- Publication date
- 01/10/2019
- Field of study
Correction: PEDIATRIC RHEUMATOLOGY Volume: 18 Issue: 1 Article Number: 14 DOI: 10.1186/s12969-019-0396-4Background JIA-associated uveitis (JIAU) is a serious, sight-threatening disease with significant long-term complications and risk of blindness, even with improved contemporary treatments. The MIWGUC was set up in order to propose specific JIAU activity and response items and to validate their applicability for clinical outcome studies. Methods The group consists of 8 paediatric rheumatologists and 7 ophthalmologists. A consensus meeting took place on November 2015 in Barcelona (Spain) with the objective of validating the previously proposed measures. The validation process was based on the results of a prospective open, international, multi-centre, cohort study designed to validate the outcome measures proposed by the initial MIWGUC group meeting in 2012. The meeting used the same Delphi and nominal group technique as previously described in the first paper from the MIWGUC group (Arthritis Care Res 64:1365-72, 2012). Patients were included with a diagnosis of JIA, aged less than 18 years, and with active uveitis or an uveitis flare which required treatment with a disease-modifying anti-rheumatic drug. The proposed outcome measures for uveitis were collected by an ophthalmologist and for arthritis by a paediatric rheumatologist. Patient reported outcome measures were also measured. Results A total of 82 patients were enrolled into the validation cohort. Fifty four percent (n = 44) had persistent oligoarthritis followed by rheumatoid factor negative polyarthritis (n = 15, 18%). The mean uveitis disease duration was 3.3 years (SD 3.0). Bilateral eye involvement was reported in 65 (79.3%) patients. The main findings are that the most significant changes, from baseline to 6 months, are found in the AC activity measures of cells and flare. These measures correlate with the presence of pre-existing structural complications and this has implications for the reporting of trials using a single measure as a primary outcome. We also found that visual analogue scales of disease activity showed significant change when reported by the ophthalmologist, rheumatologist and families. The measures formed three relatively distinct groups. The first group of measures comprised uveitis activity, ocular damage and the ophthalmologists' VAS. The second comprised patient reported outcomes including disruption to school attendance. The third group consisted of the rheumatologists' VAS and the joint score. Conclusions We propose distinctive and clinically significant measures of disease activity, severity and damage for JIAU. This effort is the initial step for developing a comprehensive outcome measures for JIAU, which incorporates the perspectives of rheumatologists, ophthalmologists, patients and families.Peer reviewe
Demographic, clinical and antibody characteristics of patients with digital ulcers in systemic sclerosis: data from the DUO Registry
- Author
- Adoue D
- Agard C
- Ahmadi K
- Airo P
- Aizpuru EM
- Akanay-Diesel S
- Albertsson K
- Almeida I
- Alsheimer B
- Alves J
- Andersen M
- Anderson M
- Andresen J
- Angeles Aquirre M
- Antivalle M
- Aries P
- Aslanidis S
- Aslkaksen HK
- Assmann G
- Assous N
- Athanassiou P
- Athiveer P.
- Baguley E
- Bajoochi G
- Bakkeheim V
- Bakland G
- Balquiere S
- Barbado J
- Barca BA
- Barnd A
- Barth S
- Battaglia E
- Baudaoin P
- Baumann C
- Becerra ND
- Becker M
- Becvar R
- Bekou V
- Belin E
- Bellido D
- Bellisai F
- Bellissimo S
- Belloli L
- Belloni B
- Bendvold A
- Beneton N
- Berezne A
- Berthier S
- Bessis D
- Beyer C
- Bezanahary H
- Bijl M
- Bitter H
- Blaise S
- Blanco JJ
- Blanco JS
- Blank N
- Bloching HH
- Blum L
- Blume J
- Boesenberg I
- Bohmova J
- Bootsma H
- Boro D
- Bortoluzzi A
- Boulon C
- Boussely N
- Bracin T
- Brand H
- Bravetti V
- Brodmann M
- Broll H
- Brouwer L
- Brown S
- Bruckner L
- Bruyn G
- Bucci R
- Caamano M
- Cabane J
- Callejas JL
- Calvo J
- Camara I
- Camps MT
- Cantatore F
- Carpentier P
- Cartry O
- Castellvi I
- Castellvi I
- Cazalets-lacoste C
- Chakravarty K
- Charlanne H
- Chatelus E
- Chiffot H
- Choong LM
- Chromik S
- Cipriani P
- Coelho P
- Cohen JD
- Colaci M
- Cole S
- Coleman JV
- collet E
- Colonna L
- Constans J
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- Cordeiro A
- Corteguera M
- Costa J
- Couraud A
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- Cuomo G
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- De Angeli R
- de Bois M
- De la Puente C
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- De Vita S
- Deboves O
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- del Carmen Torres Martin M
- del la Pena Lefebvre PG
- del Mar Ripoll Macias M
- Del Papa N
- del Rio AH
- Delgado EG
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- Dohse A
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- DUO Registry investigators. Collaborators: Stetter M
- Durant C
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- Wlarvens M
- Woijtasik G
- Wollersdorfer E
- Worm M
- Wragg E
- Wuerzburg I
- Xu Y
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- Zemanova I
- Zeni S
- Zenone T
- Zeuner R
- Ziai M
- Zijlstra TR
- Zimba S
- Zuily S
- Zultak M
- Zuper R
- Zwenger S
- Publication venue
- BMJ Group
- Publication date
- 01/01/2012
- Field of study
OBJECTIVES: The Digital Ulcers Outcome (DUO) Registry was designed to describe the clinical and antibody characteristics, disease course and outcomes of patients with digital ulcers associated with systemic sclerosis (SSc).
METHODS: The DUO Registry is a European, prospective, multicentre, observational, registry of SSc patients with ongoing digital ulcer disease, irrespective of treatment regimen. Data collected included demographics, SSc duration, SSc subset, internal organ manifestations, autoantibodies, previous and ongoing interventions and complications related to digital ulcers.
RESULTS: Up to 19 November 2010 a total of 2439 patients had enrolled into the registry. Most were classified as either limited cutaneous SSc (lcSSc; 52.2%) or diffuse cutaneous SSc (dcSSc; 36.9%). Digital ulcers developed earlier in patients with dcSSc compared with lcSSc. Almost all patients (95.7%) tested positive for antinuclear antibodies, 45.2% for anti-scleroderma-70 and 43.6% for anticentromere antibodies (ACA). The first digital ulcer in the anti-scleroderma-70-positive patient cohort occurred approximately 5 years earlier than the ACA-positive patient group.
CONCLUSIONS: This study provides data from a large cohort of SSc patients with a history of digital ulcers. The early occurrence and high frequency of digital ulcer complications are especially seen in patients with dcSSc and/or anti-scleroderma-70 antibodies
Systemic diseases:from amyloidosis to cryoglobulinemia
- Author
- Banner Nicholas R
- Benson Merrill D
- Blanc François
- Buxton-Thomas Muriel
- Cacoub Patrice
- Castro Maria Carmen
- Coppéré Brigitte
- de YĂ©benes Garcia
- Dimopoulos Meletios A
- Fernandez-Nebro Antonio
- Garcia-Vicuna Rosario
- Gillmore Julian D
- GrĂŒnfeld Jean-Pierre
- Hawkins Philip
- Heaton Nigel D
- Hendry Bruce M
- Irigoyen Maria V
- JesĂșs MarĂa
- Karras Alexandre
- Kastritis Efstathios
- Liepnieks Juris J
- Maccarthy Philip
- Mathias Christopher J
- Merlini Giampaolo
- Monaghan Mark
- Musset Lucile
- O'Grady John
- Olivé Alejandro
- Palladini Giovanni
- Perard Laurent
- Perfetti Vittorio
- Piette Jean-Charles
- Portmann Bernard
- Rela Mohamed
- Resche-Rigon Mathieu
- Riera Elena
- Rosenzwajg Michele
- Saadoun David
- Schoindre Yoland
- Sene Damien
- Stangou Arie J
- Terrier Benjamin
- Varela Angela Herranz
- Wechalekar Ashutosh D
- Wendon Julia
- Publication venue
- 'American Society of Nephrology (ASN)'
- Publication date
- 01/11/2010
- Field of study
Systemic Diseases: From Amyloidosis to CryoglobulinemiaHereditary fibrinogen A α-chain amyloidosis: Phenotypic characterization of a systemic disease and the role of liver transplantation. Blood
- Author
- Alejandro Olivé
- Alexandre Karras
- Angela Herranz Varela
- Antonio Fernandez-Nebro
- Arie J. Stangou
- Ashutosh D. Wechalekar
- Benjamin Terrier
- Bernard Portmann
- Brigitte Coppéré
- Bruce M. Hendry
- Christopher J. Mathias
- Damien Sene
- David Saadoun
- Efstathios Kastritis
- Elena Riera
- François Blanc
- Garcia de YĂ©benes
- Giampaolo Merlini
- Gillmore
- Giovanni Palladini
- Jean-Charles Piette
- Jean-Pierre GrĂŒnfeld
- John O'Grady
- Julia Wendon
- Julian D. Gillmore
- Juris J. Liepnieks
- Laurent Perard
- Lucile Musset
- Maria Carmen Castro
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- Mark Monaghan
- MarĂa JesĂșs
- Mathieu Resche-Rigon
- Meletios A. Dimopoulos
- Merrill D. Benson
- Michele Rosenzwajg
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- Philip Hawkins
- Philip MacCarthy
- Rosario Garcia-Vicuna
- Vittorio Perfetti
- Yoland Schoindre
- Publication venue
- 'American Society of Nephrology (ASN)'
- Publication date
- Field of study
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- Prefazione
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- Prevost Abbe J
- Preyost Marcel P.
- Proface de Fr
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- Urbani Giuseppe M.
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- Valdes Juan E.
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- von Morariu
- Vossler K.
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- Wilmotte
- Wittlin A. St.
- Wloka B.
- Wocke H.
- Woledge
- Wolff M. J.
- Wright Edith A.
- Xhe
- Xhe
- Yaari A.
- Yale Romanic Studies S
- Yale Romanic Studies S
- Yale Romanic Studies S
- Yelez de Guevara Luis E. B.
- Yerissimo Joso D.
- Yezilla Castellanos
- Yillaespesa Francisco M.
- Zamboni A.
- Zeller G.
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- Zola Emile
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- Zorrilla Joso J.
- Zr
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- Zr
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- Zu
- Zum Felde A.
- °o
- ·» I
- Publication venue
- 'Walter de Gruyter GmbH'
- Publication date
- 01/01/1940
- Field of study
Demographic, clinical and antibody characteristics of patients with digital ulcers in systemic sclerosis: data from the DUO Registry
- Author
- Bucci R Puppo F, De Angeli R, Grassi W, Cipriani P, Mazzone A, Faggioli P, Severino A, Scorza R, Belloli L, Ughi N, Antivalle M, Del Papa N, Maglione W, Zeni S, Ferri C, Colaci M, Varcasia G, Cuomo G, Cozzi F, Triolo G, Gatti S, Montecucco CM, Doveri M, Nigro A, Olivieri I, Bajocchi G, Rosato E, Salsano F, Faustini F, Ferraccioli G, Colonna L, Pallotta S, Riccieri V, Mussi A, Bellisai F, Galeazzi M, Fusaro E, Saracco M, Pellerito R, Masolini P, De Vita S, Lombardi S, Lunardi C, Moolenburgh JD, Heurkens AH, Voskuyl A, Hak AE, Stroes ES, Remans J, Gerdes V, van Woerkom JM, de Long AJ, Kaasjager HA, Visser H, Janssen M, Van Guldener C, Van Neer F, Vos P, Peters AJ, Hulsmans H, Ronday K, Goekoop R, Ewals J, Valentijn R, de Bois M, Westedt ML, Siewertsz van Reesema D, Knifjj-Dutmer E, Stolk JN, Willems H, Kuiper-geertsma DG, Baudaoin P, Fretter P, Westra R, Sonnaville PB, SMIT A, Bootsma H, Brouwer L, Bijl M, Molders N, Lebrun C, van der Veen MJ, Noordzij M, Houben H, Landewe RM, Vercoutere W, Jahangier de Veen ZN, Zijlstra TR, Ubels F, Bruyn G, Jansen P, Schuerwegh A, Huizinga TW, Paassen P, Hurkens T, Geurts M, van den Hoogen F, Vonk M, Jacobs PJ, Groenendael JH, Seys P, van Zeben D, van Paassen H, Groenendael J, Han KH, Wlarvens M, van Hagen M, van Daele P, Dolhain R, Gerards AH, van der Lubbe P, Kanter MD, Muller WH, Ton E, Van Krugten M, van Gameren I, Lanting P, den Hengst C, Gjessdal CG, Hjertaker SL, Madland TM, Bendvold A, Bitter H, Hoffmann-Vold AM, Midtvedt O, Bakland G, Aslkaksen HK, Seip M, Kalstad S, Koldingsnes W, Grandauent B, Nordvag BY, Stran EK, Skomsvoll J, Andersen M, Thomsen RS, Pedersen T, Bakkeheim V, Cordeiro A, Alves J, Oliveira S, Coelho P, Resende C, Ponte C, Almeida I, Silva I, Santos C, Camara I, Costa J, Hellstrom H, Mohammad A, Lind I, Lind K, Bracin T, Liljequist E, Vingren T, Ostenson A, Hermansson E, Thorsson C, Soderlin M, Nordin A, Waldheim E, Vengemyr K, Albertsson K, Karlsson ML, Rydvald Y, Rizk M, Dolnicar AS, Lukac J, James J, Mchugh N, Cole S, Brown S, Hamilton A, Faizal A, Hall F, Murphy K, Skingle S, Harris H, Madhok F, Hampson R, Baguley E, Ogunbambi G O, Lamb J, Anderson M, Moots R, White-Alao B, Morrison C, Dobson J, Gordon P, Salerno R, Denton C, Parker L, Ochiel R, Vincent R, Zimba S, Ngcozana T, Xu Y, D'Cruz D, Choong LM, Herrick A, Wragg E, Manning J, Moore T, Kelsey C, Chakravarty K, Skyes H, Athiveer P.
- Cantatore FP.
- Denton CP Krieg T, Guillevin L, Schwierin B, Rosenberg D, Silkey M, Zultak M, Matucci-Cerinic M
- Stetter M Lackner K, Tomi N, Hafner F, Brodmann M, Kuen-Spiegel M, Kolle H, Raffier B, Hamberger N, Metz S, Siebel C, Trummer M, Thonhofer R, Illmer X, Trautinger F, Schmidt P, Rintelen B, Sautner J, Willfort-Ehringer A, Margeta C, Monshi B, Pirkhammer D, Richter L, Holzer G, Minmair G, Broll H, Takacs M, Hirschl M, Mesaric P, Feldmann R, Semmelweis K, Hundstorfer M, Reinhart V, Maurer B, Verner D, Distler O, Schmidt-Bosshard R, Bohmova J, Prochazkova L, Nemec P, Fojtik Z, Soukup T, Smrzova A, Suchy D, Zemanova I, Becvar R, Gawlik A, Koch M, Rauen T, Voss B, Kurthen R, Unholzer A, Starz H, Welzel J, Plaumann K, Merk B, Bloching HH, Moosig F, Frey P, Kahl S, Schleenbecker H, Storck-Mueller K, Schwarting A, Hazenbiller A, Nichelmann V, Flaig W, Rumbaur C, Boesenberg I, Schmeiser T, Marx J, Mayer L, Stein T, Ochs W, Rasche C, Worm M, Riemekasten G, Deuschle K, Becker M, Kleiner HJ, Schulze K, Tiggers C, Peters J, Kirschke J, Schaefer C, Monshausen M, Mengden T, Sadeghlar F, Seidel M, Hillebrecht C, Andresen J, Reemtsen R, Stoeckl F, Sperling S, Podda M, Wagner N, Guenzel J, Wuerzburg I, Luethke K, Enderlein M, Kayser M, Gerber A, Haust M, Hoff NP, Mota R, Akanay-Diesel S, Jahnke K, Mettler S, Toeller S, Zwenger S, Klein E, Hahn K, Beyer C, Distler J, Katzemich A, Erfurt-berge C, Sticherling M, Schuch F, Rapp P, Mitchell A, Freundlieb C, Rushentsova U, Himsel A, Henkemeier U, Eilbacher P, Ullrich-Guenther C, Neul S, Oelsner M, Hermanns G, Fiene M, Gause A, Mensing C, Klings D, Mensing H, Messall J, Zuper R, May D, Bruckner L, Sheikh N, Aries P, Kirchberg S, Funkert A, Blank N, Lupaschko S, Schwuerzer-Voit M, Meier L, Herr U, Meier U, Neek G, Wernitzsch H, Pfoehler C, Assmann G, Vosswinkel J, Krog B, Wollersdorfer E, Oltmann-Schroeder J, Zeuner R, Uhlig S, Barth S, Huegel R, Glaeser R, Rabe B, Schuster J, Scholz J, Kremer K, Robakidze-Torbahn M, Moinzadeh P, Mittag M, Dohse A, Muhlack A, Schultz L, Schult S, Frambach Y, Kettenbach A, Fell I, Schweda K, Steinbrink K, Podobinska M, Harmuth W, Nielen C, Kaczmarczyk A, Kellner C, von Oelhafen J, von Bildering PB, Kunze S, Niedermeier A, Messer G, Sardy M, Bekou V, Belloni B, Huettig B, Ziai M, Hein R, Hallecker A, Gaubitz M, Hallermann C, Schmidt K, Herrgott I, Hildebrandt B, Eiden E, Guertler I, Gernot Scheibl E, Brand H, Kaeding U, Weiss E, Reischel N, Kern S, Baumann C, Hellmich B, Loeffler C, Pflugfelder J, Karaenke P, Ruchenburg J, Blume J, Zabel M, Deppermann N, Chromik S, Metzler C, Krupp E, Rumpel H, Krause Rostock JO, Kneitz C, Federow I, Schneider K, Semmler M, Hapke S, Barnd A, Linke M, Kampe-Juzak E, Knoebel K, Niefanger K, Wilhelm HU, Lauterwein B, Fierlbeck G, Schanz S, Pfeiffer C, Hassel R, Wahn H, Schildt K, von Elling A, Boro D, Ebel J, Ahmadi K, Moritz D, Dietl S, Dyballa J, Alsheimer B, Schuetz N, Schuart T, Mueglich C, Tony HP, Marina P, Deininger F, Hartmann F, Olsen AB, Sondergaard KH, Naderi Y, Iversen LV, Karlsmark T, Knudsen JB, Gil JG, Lopez JC, Tasende JA, Gonzales MF, Sandoval AA, del Carmen Torres Martin M, Corteguera M, Barca BA, Montes IC, de la Torre RG, Victoria Egurbide M, Pros A, Munoz J, Simeon CP, Espinosa G, Espinposa G, Rodriguez MA, Castellvi I, Mascaro JM, Bellido D, Manzanedo VS, Huertas MP, Sanchez MD, Trenado MS, Garcia PV, Gines Martinez F, Angeles Aquirre M, del Rio AH, Vazquez JL, Coleman JV, Lopez MR, Sanchez PS, Aizpuru EM, Mateo FJ, Callejas JL, Ortego N, Castellvi I, Santo MP, Rubio M, Martin I, Cruz A, Crespo M, Ramos PC, Fernandez AS, Filloy JA, Rodriguez TR, Marhuenda AR, Blanco JJ, Hernan MG, Mendoza AZ, De la Puente C, Rabaneda EV, de Vicuna RG, del Mar Ripoll Macias M, del la Pena Lefebvre PG, de Ramon E, Camps MT, Fernandez C, Miguelez R, Uson J, Delgado EG, Villaverde V, Maceiras F, Cruz J, Mosquera JA, Mera A, Pampin EP, Blanco JS, Maneiro JR, Diaz JJ, Losada L, Caamano M, Fernandez S, Insua SA, Laurin CU, Sanchez J, Fernandez NC, Becerra ND, Garcia A, Nicolas GM, del Carmen Ortega de la O M, Rueda A, Calvo J, Roman Ivorra J, Sancho Alegre JJ, Barbado J, Montes J, Saez L, Kaarto A, Makinen H, Madaule S, Dadban A, Lok C, Ferrandiz D, Moiton MP, Magy-Bertrand N, Taieb A, Droitcourt C, Belin E, Balquiere S, Prey S, Boulon C, Constans J, Richez C, Sassolas B, Misery L, Greco M, collet E, Berthier S, Leguy-Seguin V, Imbert B, Carpentier P, Blaise S, Maillard H, Beneton N, Launay D, Hachulla E, Woijtasik G, Charlanne H, Lambert M, Jourdain N, Hatron PY, Morell S, Spars A, Couraud A, Doeffel-hantz V, Fauchais AL, Vidal E, Goudran G, Bezanahary H, Boussely N, Manea P, Dumonteil S, Loustaud-ratti V, Hot A, Coppere B, Desmurs-Clavel H, Ninet J, Girard-Madoux MH, Granel B, Keynote A, Khau van Kien A, Rullier P, Le Quellec A, Riviere S, Bessis D, Cohen JD, Farcas C, Granel-brocard F, Agard C, Durant C, Fuzibet JG, Queyrel V, Berezne A, Guillevin L, Mouthon L, Frances C, Toledano C, Cabane J, Tiev K, Farge D, Keshtmand H, Lazareth I, Priollet P, Michon-Pasturel U, Wipff J, Assous N, Cartry O, Kostrzwewa E, Doutre MS, Blum L, Reguiai Z, Letremy A, Perlat A, Cazalets-lacoste C, Decaux O, Jego P, Duval-modeste AB, Deboves O, Sordet C, Chatelus E, Chiffot H, Sibillia J, Couret B, Moulis G, Sailler L, Adoue D, Gaches F, Diot E, Skowron F, Zenone T, Quemeneur T, Kyndt X, Wahl D, Zuily S, Moline T, Bravetti V, Galanopoulos N, Vasilopoulos D, Vlachoyannopoulos P, Kritikos I, Tsifetaki N, Koutroumbas A, Garyfallos A, Athanassiou P, Aslanidis S, Kamali S, Dimitroulas T, Galanopoulo V, Elezoglou A, Grier A, Murray M, O'Rourke M, Gabrielli A, Lapadula G, Serafino L, Terlizzi N, Bellissimo S, Stisi S, Malavolta N, Airo P, Vacca A, Battaglia E, Foti R, Mazzuca S, Bortoluzzi A, Trotta F, Galluccio F, Marucci A
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