Development and implementation of the AIDA International Registry for patients with VEXAS syndrome

Antonio Vitale; Valeria Caggiano; Francesca Della Casa; José Hernández-Rodríguez; Micol Frassi; Sara Monti; Abdurrahman Tufan; Salvatore Telesca; Edoardo Conticini; Gaafar Ragab; Giuseppe Lopalco; Ibrahim Almaghlouth; Rosa Maria R. Pereira; Derya Yildirim; Marco Cattalini; Achille Marino; Teresa Giani; Francesco La Torre; Piero Ruscitti; Emma Aragona; Ewa Wiesik-Szewczyk; Emanuela Del Giudice; Petros P. Sfikakis; Marcello Govoni; Giacomo Emmi; Maria Cristina Maggio; Roberto Giacomelli; Francesco Ciccia; Giovanni Conti; Giorgio Conti; Djouher Ait-Idir; Claudia Lomater; Vito Sabato; Matteo Piga; Ali Sahin; Daniela Opris-Belinski; Ruxandra Ionescu; Elena Bartoloni; Franco Franceschini; Paola Parronchi; Amato De Paulis; Gerard Espinosa; Armin Maier; Gian Domenico Sebastiani; Antonella Insalaco; Farhad Shahram; Paolo Sfriso; Francesca Minoia; Maria Alessio; Joanna Makowska; Gülen Hatemi; Nurullah Akkoç; Francesca Li Gobbi; Antonio Gidaro; Alma Nunzia Olivieri; Sulaiman M. Al-Mayouf; Sükran Erten; Stefano Gentileschi; Ibrahim Vasi; Maria Tarsia; Ayman Abdel-Monem Ahmed Mahmoud; Bruno Frediani; Musa Fares Alzahrani; Ahmed Hatem Laymouna; Francesca Ricci; Fabio Cardinale; Karina Jahnz-Rózyk; Gian Marco Tosi; Francesca Crisafulli; Alberto Balistreri; Marília A. Dagostin; Mahmoud Ghanema; Carla Gaggiano; Jurgen Sota; Ilenia Di Cola; Claudia Fabiani; Henrique A. Mayrink Giardini; Alessandra Renieri; Alessandra Fabbiani; Anna Carrer; Monica Bocchia; Federico Caroni; Donato Rigante; Luca Cantarini

doi:10.3389/fmed.2022.926500

Development and implementation of the AIDA International Registry for patients with VEXAS syndrome

Antonio Vitale, Valeria Caggiano, Francesca Della Casa, José Hernández-Rodríguez, Micol Frassi, Sara Monti, Abdurrahman Tufan, Salvatore Telesca, Edoardo Conticini, Gaafar Ragab, Giuseppe Lopalco, Ibrahim Almaghlouth, Rosa Maria R. Pereira, Derya Yildirim, Marco Cattalini, Achille Marino, Teresa Giani, Francesco La Torre, Piero Ruscitti, Emma AragonaEwa Wiesik-Szewczyk, Emanuela Del Giudice, Petros P. Sfikakis, Marcello Govoni, Giacomo Emmi, Maria Cristina Maggio, Roberto Giacomelli, Francesco Ciccia, Giovanni Conti, Giorgio Conti, Djouher Ait-Idir, Claudia Lomater, Vito Sabato, Matteo Piga, Ali Sahin, Daniela Opris-Belinski, Ruxandra Ionescu, Elena Bartoloni, Franco Franceschini, Paola Parronchi, Amato De Paulis, Gerard Espinosa, Armin Maier, Gian Domenico Sebastiani, Antonella Insalaco, Farhad Shahram, Paolo Sfriso, Francesca Minoia, Maria Alessio, Joanna Makowska, Gülen Hatemi, Nurullah Akkoç, Francesca Li Gobbi, Antonio Gidaro, Alma Nunzia Olivieri, Sulaiman M. Al-Mayouf, Sükran Erten, Stefano Gentileschi, Ibrahim Vasi, Maria Tarsia, Ayman Abdel-Monem Ahmed Mahmoud, Bruno Frediani, Musa Fares Alzahrani, Ahmed Hatem Laymouna, Francesca Ricci, Fabio Cardinale, Karina Jahnz-Rózyk, Gian Marco Tosi, Francesca Crisafulli, Alberto Balistreri, Marília A. Dagostin, Mahmoud Ghanema, Carla Gaggiano, Jurgen Sota, Ilenia Di Cola, Claudia Fabiani, Henrique A. Mayrink Giardini, Alessandra Renieri, Alessandra Fabbiani, Anna Carrer, Monica Bocchia, Federico Caroni, Donato Rigante, Luca Cantarini

Risultato della ricerca: Contributo in rivista › Articolo in rivista

Abstract

Objective: The aim of this paper is to present the AutoInflammatory Disease Alliance (AIDA) International Registry dedicated to Vacuoles, E1 enzyme, X-linked, Autoinflammatory, Somatic (VEXAS) syndrome, describing its design, construction, and modalities of dissemination. Methods: The present registry is a clinical, physician-driven, population- and electronic-based instrument designed for the retrospective and prospective collection of real-life data. Data gathering is based on the Research Electronic Data Capture (REDCap) tool and is intended to obtain real-world evidence for daily patients’ management; the registry may potentially communicate with other on-line tools dedicated to VEXAS syndrome, enhancing international collaboration and data sharing for research purposes. The registry is handy enough to be easily modified to meet future needs regarding VEXAS syndrome. Results: To date (April 2022), 105 Centers from 23 Countries in 4 continents have been involved; 287 users (106 Principal Investigators, 177 Site Investigators, 2 Lead Investigators, and 2 data managers) may already enter the registry for data collection and sharing. The registry includes 4950 fields organised into 18 instruments designed to fully describe patient’s details about demographics, clinical manifestations, symptoms, histologic details about skin and bone marrow biopsies and aspirate, laboratory features, complications, comorbidities, therapies, and healthcare access. Conclusions: This international Registry for patients with VEXAS syndrome will allow the achievement of a comprehensive knowledge about this new disease in a relatively short time with the final goal to obtain real-world evidence data for daily clinical practice. This project can be found on https://clinicaltrials.gov NCT 05200715

Lingua originale	English
pagine (da-a)	1-9
Numero di pagine	9
Rivista	Frontiers in Medicine
Volume	2022
DOI	https://doi.org/10.3389/fmed.2022.926500
Stato di pubblicazione	Pubblicato - 2022

Keywords

Registry
VEXAS syndrome

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10.3389/fmed.2022.926500

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Vitale, A., Caggiano, V., Della Casa, F., Hernández-Rodríguez, J., Frassi, M., Monti, S., Tufan, A., Telesca, S., Conticini, E., Ragab, G., Lopalco, G., Almaghlouth, I., Pereira, R. M. R., Yildirim, D., Cattalini, M., Marino, A., Giani, T., La Torre, F., Ruscitti, P., ... Cantarini, L. (2022). Development and implementation of the AIDA International Registry for patients with VEXAS syndrome. Frontiers in Medicine, 2022, 1-9. https://doi.org/10.3389/fmed.2022.926500

@article{f323eca481734f83beed4ad141aa1b3a,

title = "Development and implementation of the AIDA International Registry for patients with VEXAS syndrome",

abstract = "Objective: The aim of this paper is to present the AutoInflammatory Disease Alliance (AIDA) International Registry dedicated to Vacuoles, E1 enzyme, X-linked, Autoinflammatory, Somatic (VEXAS) syndrome, describing its design, construction, and modalities of dissemination. Methods: The present registry is a clinical, physician-driven, population- and electronic-based instrument designed for the retrospective and prospective collection of real-life data. Data gathering is based on the Research Electronic Data Capture (REDCap) tool and is intended to obtain real-world evidence for daily patients{\textquoteright} management; the registry may potentially communicate with other on-line tools dedicated to VEXAS syndrome, enhancing international collaboration and data sharing for research purposes. The registry is handy enough to be easily modified to meet future needs regarding VEXAS syndrome. Results: To date (April 2022), 105 Centers from 23 Countries in 4 continents have been involved; 287 users (106 Principal Investigators, 177 Site Investigators, 2 Lead Investigators, and 2 data managers) may already enter the registry for data collection and sharing. The registry includes 4950 fields organised into 18 instruments designed to fully describe patient{\textquoteright}s details about demographics, clinical manifestations, symptoms, histologic details about skin and bone marrow biopsies and aspirate, laboratory features, complications, comorbidities, therapies, and healthcare access. Conclusions: This international Registry for patients with VEXAS syndrome will allow the achievement of a comprehensive knowledge about this new disease in a relatively short time with the final goal to obtain real-world evidence data for daily clinical practice. This project can be found on https://clinicaltrials.gov NCT 05200715",

keywords = "Registry, VEXAS syndrome, Registry, VEXAS syndrome",

author = "Antonio Vitale and Valeria Caggiano and {Della Casa}, Francesca and Jos{\'e} Hern{\'a}ndez-Rodr{\'i}guez and Micol Frassi and Sara Monti and Abdurrahman Tufan and Salvatore Telesca and Edoardo Conticini and Gaafar Ragab and Giuseppe Lopalco and Ibrahim Almaghlouth and Pereira, {Rosa Maria R.} and Derya Yildirim and Marco Cattalini and Achille Marino and Teresa Giani and {La Torre}, Francesco and Piero Ruscitti and Emma Aragona and Ewa Wiesik-Szewczyk and {Del Giudice}, Emanuela and Sfikakis, {Petros P.} and Marcello Govoni and Giacomo Emmi and Maggio, {Maria Cristina} and Roberto Giacomelli and Francesco Ciccia and Giovanni Conti and Giorgio Conti and Djouher Ait-Idir and Claudia Lomater and Vito Sabato and Matteo Piga and Ali Sahin and Daniela Opris-Belinski and Ruxandra Ionescu and Elena Bartoloni and Franco Franceschini and Paola Parronchi and {De Paulis}, Amato and Gerard Espinosa and Armin Maier and Sebastiani, {Gian Domenico} and Antonella Insalaco and Farhad Shahram and Paolo Sfriso and Francesca Minoia and Maria Alessio and Joanna Makowska and G{\"u}len Hatemi and Nurullah Akko{\c c} and {Li Gobbi}, Francesca and Antonio Gidaro and Olivieri, {Alma Nunzia} and Al-Mayouf, {Sulaiman M.} and S{\"u}kran Erten and Stefano Gentileschi and Ibrahim Vasi and Maria Tarsia and Mahmoud, {Ayman Abdel-Monem Ahmed} and Bruno Frediani and {Fares Alzahrani}, Musa and Laymouna, {Ahmed Hatem} and Francesca Ricci and Fabio Cardinale and Karina Jahnz-R{\'o}zyk and Tosi, {Gian Marco} and Francesca Crisafulli and Alberto Balistreri and Dagostin, {Mar{\'i}lia A.} and Mahmoud Ghanema and Carla Gaggiano and Jurgen Sota and {Di Cola}, Ilenia and Claudia Fabiani and Giardini, {Henrique A. Mayrink} and Alessandra Renieri and Alessandra Fabbiani and Anna Carrer and Monica Bocchia and Federico Caroni and Donato Rigante and Luca Cantarini",

year = "2022",

doi = "10.3389/fmed.2022.926500",

language = "English",

volume = "2022",

pages = "1--9",

journal = "Frontiers in Medicine",

issn = "2296-858X",

publisher = "Frontiers Media SA",

}

Vitale, A, Caggiano, V, Della Casa, F, Hernández-Rodríguez, J, Frassi, M, Monti, S, Tufan, A, Telesca, S, Conticini, E, Ragab, G, Lopalco, G, Almaghlouth, I, Pereira, RMR, Yildirim, D, Cattalini, M, Marino, A, Giani, T, La Torre, F, Ruscitti, P, Aragona, E, Wiesik-Szewczyk, E, Del Giudice, E, Sfikakis, PP, Govoni, M, Emmi, G, Maggio, MC, Giacomelli, R, Ciccia, F, Conti, G, Conti, G, Ait-Idir, D, Lomater, C, Sabato, V, Piga, M, Sahin, A, Opris-Belinski, D, Ionescu, R, Bartoloni, E, Franceschini, F, Parronchi, P, De Paulis, A, Espinosa, G, Maier, A, Sebastiani, GD, Insalaco, A, Shahram, F, Sfriso, P, Minoia, F, Alessio, M, Makowska, J, Hatemi, G, Akkoç, N, Li Gobbi, F, Gidaro, A, Olivieri, AN, Al-Mayouf, SM, Erten, S, Gentileschi, S, Vasi, I, Tarsia, M, Mahmoud, AA-MA, Frediani, B, Fares Alzahrani, M, Laymouna, AH, Ricci, F, Cardinale, F, Jahnz-Rózyk, K, Tosi, GM, Crisafulli, F, Balistreri, A, Dagostin, MA, Ghanema, M, Gaggiano, C, Sota, J, Di Cola, I, Fabiani, C, Giardini, HAM, Renieri, A, Fabbiani, A, Carrer, A, Bocchia, M, Caroni, F, Rigante, D & Cantarini, L 2022, 'Development and implementation of the AIDA International Registry for patients with VEXAS syndrome', Frontiers in Medicine, vol. 2022, pagg. 1-9. https://doi.org/10.3389/fmed.2022.926500

TY - JOUR

T1 - Development and implementation of the AIDA International Registry for patients with VEXAS syndrome

AU - Vitale, Antonio

AU - Caggiano, Valeria

AU - Della Casa, Francesca

AU - Hernández-Rodríguez, José

AU - Frassi, Micol

AU - Monti, Sara

AU - Tufan, Abdurrahman

AU - Telesca, Salvatore

AU - Conticini, Edoardo

AU - Ragab, Gaafar

AU - Lopalco, Giuseppe

AU - Almaghlouth, Ibrahim

AU - Pereira, Rosa Maria R.

AU - Yildirim, Derya

AU - Cattalini, Marco

AU - Marino, Achille

AU - Giani, Teresa

AU - La Torre, Francesco

AU - Ruscitti, Piero

AU - Aragona, Emma

AU - Wiesik-Szewczyk, Ewa

AU - Del Giudice, Emanuela

AU - Sfikakis, Petros P.

AU - Govoni, Marcello

AU - Emmi, Giacomo

AU - Maggio, Maria Cristina

AU - Giacomelli, Roberto

AU - Ciccia, Francesco

AU - Conti, Giovanni

AU - Conti, Giorgio

AU - Ait-Idir, Djouher

AU - Lomater, Claudia

AU - Sabato, Vito

AU - Piga, Matteo

AU - Sahin, Ali

AU - Opris-Belinski, Daniela

AU - Ionescu, Ruxandra

AU - Bartoloni, Elena

AU - Franceschini, Franco

AU - Parronchi, Paola

AU - De Paulis, Amato

AU - Espinosa, Gerard

AU - Maier, Armin

AU - Sebastiani, Gian Domenico

AU - Insalaco, Antonella

AU - Shahram, Farhad

AU - Sfriso, Paolo

AU - Minoia, Francesca

AU - Alessio, Maria

AU - Makowska, Joanna

AU - Hatemi, Gülen

AU - Akkoç, Nurullah

AU - Li Gobbi, Francesca

AU - Gidaro, Antonio

AU - Olivieri, Alma Nunzia

AU - Al-Mayouf, Sulaiman M.

AU - Erten, Sükran

AU - Gentileschi, Stefano

AU - Vasi, Ibrahim

AU - Tarsia, Maria

AU - Mahmoud, Ayman Abdel-Monem Ahmed

AU - Frediani, Bruno

AU - Fares Alzahrani, Musa

AU - Laymouna, Ahmed Hatem

AU - Ricci, Francesca

AU - Cardinale, Fabio

AU - Jahnz-Rózyk, Karina

AU - Tosi, Gian Marco

AU - Crisafulli, Francesca

AU - Balistreri, Alberto

AU - Dagostin, Marília A.

AU - Ghanema, Mahmoud

AU - Gaggiano, Carla

AU - Sota, Jurgen

AU - Di Cola, Ilenia

AU - Fabiani, Claudia

AU - Giardini, Henrique A. Mayrink

AU - Renieri, Alessandra

AU - Fabbiani, Alessandra

AU - Carrer, Anna

AU - Bocchia, Monica

AU - Caroni, Federico

AU - Rigante, Donato

AU - Cantarini, Luca

PY - 2022

Y1 - 2022

N2 - Objective: The aim of this paper is to present the AutoInflammatory Disease Alliance (AIDA) International Registry dedicated to Vacuoles, E1 enzyme, X-linked, Autoinflammatory, Somatic (VEXAS) syndrome, describing its design, construction, and modalities of dissemination. Methods: The present registry is a clinical, physician-driven, population- and electronic-based instrument designed for the retrospective and prospective collection of real-life data. Data gathering is based on the Research Electronic Data Capture (REDCap) tool and is intended to obtain real-world evidence for daily patients’ management; the registry may potentially communicate with other on-line tools dedicated to VEXAS syndrome, enhancing international collaboration and data sharing for research purposes. The registry is handy enough to be easily modified to meet future needs regarding VEXAS syndrome. Results: To date (April 2022), 105 Centers from 23 Countries in 4 continents have been involved; 287 users (106 Principal Investigators, 177 Site Investigators, 2 Lead Investigators, and 2 data managers) may already enter the registry for data collection and sharing. The registry includes 4950 fields organised into 18 instruments designed to fully describe patient’s details about demographics, clinical manifestations, symptoms, histologic details about skin and bone marrow biopsies and aspirate, laboratory features, complications, comorbidities, therapies, and healthcare access. Conclusions: This international Registry for patients with VEXAS syndrome will allow the achievement of a comprehensive knowledge about this new disease in a relatively short time with the final goal to obtain real-world evidence data for daily clinical practice. This project can be found on https://clinicaltrials.gov NCT 05200715

AB - Objective: The aim of this paper is to present the AutoInflammatory Disease Alliance (AIDA) International Registry dedicated to Vacuoles, E1 enzyme, X-linked, Autoinflammatory, Somatic (VEXAS) syndrome, describing its design, construction, and modalities of dissemination. Methods: The present registry is a clinical, physician-driven, population- and electronic-based instrument designed for the retrospective and prospective collection of real-life data. Data gathering is based on the Research Electronic Data Capture (REDCap) tool and is intended to obtain real-world evidence for daily patients’ management; the registry may potentially communicate with other on-line tools dedicated to VEXAS syndrome, enhancing international collaboration and data sharing for research purposes. The registry is handy enough to be easily modified to meet future needs regarding VEXAS syndrome. Results: To date (April 2022), 105 Centers from 23 Countries in 4 continents have been involved; 287 users (106 Principal Investigators, 177 Site Investigators, 2 Lead Investigators, and 2 data managers) may already enter the registry for data collection and sharing. The registry includes 4950 fields organised into 18 instruments designed to fully describe patient’s details about demographics, clinical manifestations, symptoms, histologic details about skin and bone marrow biopsies and aspirate, laboratory features, complications, comorbidities, therapies, and healthcare access. Conclusions: This international Registry for patients with VEXAS syndrome will allow the achievement of a comprehensive knowledge about this new disease in a relatively short time with the final goal to obtain real-world evidence data for daily clinical practice. This project can be found on https://clinicaltrials.gov NCT 05200715

KW - Registry

KW - VEXAS syndrome

KW - Registry

KW - VEXAS syndrome

UR - http://hdl.handle.net/10807/221444

U2 - 10.3389/fmed.2022.926500

DO - 10.3389/fmed.2022.926500

M3 - Article

SN - 2296-858X

VL - 2022

SP - 1

EP - 9

JO - Frontiers in Medicine

JF - Frontiers in Medicine

ER -

Development and implementation of the AIDA International Registry for patients with VEXAS syndrome

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Keywords

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