Development and Implementation of the Aida International Registry for Patients With Vexas Syndrome

Development and Implementation of the Aida International Registry for Patients With Vexas Syndrome Publisher

Vitale A¹ ; Caggiano V¹ ; Della Casa F² ; Hernandezrodriguez J³ ; Frassi M⁴ ; Monti S^{5, 6} ; Tufan A⁷ ; Telesca S¹ ; Conticini E¹ ; Ragab G^{8, 9} ; Lopalco G¹⁰ ; Almaghlouth I^{11, 12} ; Pereira RMR¹³ ; Yildirim D⁷ Show All Authors

Vitale A¹
Caggiano V¹
Della Casa F²
Hernandezrodriguez J³
Frassi M⁴
Monti S^{5, 6}
Tufan A⁷
Telesca S¹
Conticini E¹
Ragab G^{8, 9}
Lopalco G¹⁰
Almaghlouth I^{11, 12}
Pereira RMR¹³
Yildirim D⁷
Cattalini M¹⁴
Marino A¹⁵
Giani T¹⁶
La Torre F¹⁷
Ruscitti P¹⁸
Aragona E¹⁹
Wiesikszewczyk E²⁰
Del Giudice E²¹
Sfikakis PP²²
Govoni M²³
Emmi G²⁴
Maggio MC²⁵
Giacomelli R²⁶
Ciccia F²⁷
Conti G²⁸
Aitidir D²⁹
Lomater C³⁰
Sabato V³¹
Piga M³²
Sahin A³³
Oprisbelinski D³⁴
Ionescu R³⁴
Bartoloni E³⁵
Franceschini F⁴
Parronchi P²⁴
De Paulis A^{2, 36}
Espinosa G³
Maier A³⁷
Sebastiani GD³⁸
Insalaco A³⁹
Shahram F⁴⁰
Sfriso P⁴¹
Minoia F⁴²
Alessio M⁴³
Makowska J⁴⁴
Hatemi G⁴⁵
Akkoc N⁴⁶
Li Gobbi F⁴⁷
Gidaro A⁴⁸
Olivieri AN⁴⁹
Almayouf SM⁵⁰
Erten S⁵¹
Gentileschi S⁵²
Vasi I⁷
Tarsia M¹
Mahmoud AAMA⁸
Frediani B⁵²
Fares Alzahrani M⁵³
Laymouna AH⁸
Ricci F¹⁴
Cardinale F¹⁷
Jahnzrozyk K²⁰
Tosi GM⁵⁴
Crisafulli F⁴
Balistreri A⁵⁵
Dagostin MA¹³
Ghanema M⁸
Gaggiano C¹
Sota J¹
Di Cola I¹⁸
Fabiani C⁵⁴
Giardini HAM¹³
Renieri A^{56, 57, 58}
Fabbiani A^{56, 57, 58}
Carrer A^{56, 57, 58}
Bocchia M⁵⁹
Caroni F⁵⁹
Rigante D^{60, 61}
Cantarini L¹

Source: Frontiers in Medicine Published:2022

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: This 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, thus enhancing international collaboration and data sharing for research purposes. The Registry is practical enough to be easily modified to meet future needs regarding VEXAS syndrome. Results: To date (April 22nd, 2022), 113 Centers from 23 Countries in 4 continents have been involved; 324 users (114 Principal Investigators, 205 Site Investigators, 2 Lead Investigators, and 3 data managers) are currently able to access the registry for data entry (or data sharing) and collection. The Registry includes 4,952 fields organized 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. Conclusion: This international Registry for patients with VEXAS syndrome will allow the achievement of a comprehensive knowledge about this new disease, with the final goal to obtain real-world evidence for daily clinical practice, especially in relation to the comprehension of this disease about the natural history and the possible therapeutic approaches. This Project can be found on https://clinicaltrials.gov NCT05200715. Copyright © 2022 Vitale, Caggiano, Della Casa, Hernandez-Rodriguez, Frassi, Monti, Tufan, Telesca, Conticini, Ragab, Lopalco, Almaghlouth, Pereira, Yildirim, Cattalini, Marino, Giani, La Torre, Ruscitti, Aragona, Wiesik-Szewczyk, Del Giudice, Sfikakis, Govoni, Emmi, Maggio, Giacomelli, Ciccia, Conti, Ait-Idir, Lomater, Sabato, Piga, Sahin, Opris-Belinski, Ionescu, Bartoloni, Franceschini, Parronchi, de Paulis, Espinosa, Maier, Sebastiani, Insalaco, Shahram, Sfriso, Minoia, Alessio, Makowska, Hatemi, Akkoc, Li Gobbi, Gidaro, Olivieri, Al-Mayouf, Erten, Gentileschi, Vasi, Tarsia, Mahmoud, Frediani, Fares Alzahrani, Laymouna, Ricci, Cardinale, Jahnz-Rozyk, Tosi, Crisafulli, Balistreri, Dagostin, Ghanema, Gaggiano, Sota, Di Cola, Fabiani, Giardini, Renieri, Fabbiani, Carrer, Bocchia, Caroni, Rigante and Cantarini.

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Experts (# of related papers)

Mahmoudreza Ashrafi (1)

Style	Citing Format
MLA	Vitale A, et al.. "Development and Implementation of the Aida International Registry for Patients With Vexas Syndrome." Frontiers in Medicine, vol. 9, no. , 2022, pp. -.
APA	Vitale A, Caggiano V, Della Casa F, Hernandezrodriguez 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, ... Cantarini L (2022). Development and Implementation of the Aida International Registry for Patients With Vexas Syndrome. Frontiers in Medicine, 9(), -.
Chicago	Vitale A, Caggiano V, Della Casa F, Hernandezrodriguez J, Frassi M, Monti S, Tufan A, et al.. "Development and Implementation of the Aida International Registry for Patients With Vexas Syndrome." Frontiers in Medicine 9, no. (2022): -.
Harvard	Vitale A et al. (2022) 'Development and Implementation of the Aida International Registry for Patients With Vexas Syndrome', Frontiers in Medicine, 9(), pp. -.
Vancouver	Vitale A, Caggiano V, Della Casa F, Hernandezrodriguez J, Frassi M, Monti S, et al.. Development and Implementation of the Aida International Registry for Patients With Vexas Syndrome. Frontiers in Medicine. 2022;9():-.
BibTex	@article{ author = {Vitale A and Caggiano V and Della Casa F and Hernandezrodriguez J and Frassi M and Monti S and Tufan A and Telesca S and Conticini E and Ragab G and Lopalco G and Almaghlouth I and Pereira RMR and Yildirim D and Cattalini M and Marino A and Giani T and La Torre F and Ruscitti P and Aragona E and Wiesikszewczyk E and Del Giudice E and Sfikakis PP and Govoni M and Emmi G and Maggio MC and Giacomelli R and Ciccia F and Conti G and Aitidir D and Lomater C and Sabato V and Piga M and Sahin A and Oprisbelinski D and Ionescu R and Bartoloni E and Franceschini F and Parronchi P and De Paulis A and Espinosa G and Maier A and Sebastiani GD and Insalaco A and Shahram F and Sfriso P and Minoia F and Alessio M and Makowska J and Hatemi G and Akkoc N and Li Gobbi F and Gidaro A and Olivieri AN and Almayouf SM and Erten S and Gentileschi S and Vasi I and Tarsia M and Mahmoud AAMA and Frediani B and Fares Alzahrani M and Laymouna AH and Ricci F and Cardinale F and Jahnzrozyk K and Tosi GM and Crisafulli F and Balistreri A and Dagostin MA and Ghanema M and Gaggiano C and Sota J and Di Cola I and Fabiani C and Giardini HAM and Renieri A and Fabbiani A and Carrer A and Bocchia M and Caroni F and Rigante D and Cantarini L}, title = {Development and Implementation of the Aida International Registry for Patients With Vexas Syndrome}, journal = {Frontiers in Medicine}, volume = {9}, number = {}, pages = {-}, year = {2022} }
RIS	TY - JOUR AU - Vitale A AU - Caggiano V AU - Della Casa F AU - Hernandezrodriguez J AU - Frassi M AU - Monti S AU - Tufan A AU - Telesca S AU - Conticini E AU - Ragab G AU - Lopalco G AU - Almaghlouth I AU - Pereira RMR AU - Yildirim D AU - Cattalini M AU - Marino A AU - Giani T AU - La Torre F AU - Ruscitti P AU - Aragona E AU - Wiesikszewczyk E AU - Del Giudice E AU - Sfikakis PP AU - Govoni M AU - Emmi G AU - Maggio MC AU - Giacomelli R AU - Ciccia F AU - Conti G AU - Aitidir D AU - Lomater C AU - Sabato V AU - Piga M AU - Sahin A AU - Oprisbelinski D AU - Ionescu R AU - Bartoloni E AU - Franceschini F AU - Parronchi P AU - De Paulis A AU - Espinosa G AU - Maier A AU - Sebastiani GD AU - Insalaco A AU - Shahram F AU - Sfriso P AU - Minoia F AU - Alessio M AU - Makowska J AU - Hatemi G AU - Akkoc N AU - Li Gobbi F AU - Gidaro A AU - Olivieri AN AU - Almayouf SM AU - Erten S AU - Gentileschi S AU - Vasi I AU - Tarsia M AU - Mahmoud AAMA AU - Frediani B AU - Fares Alzahrani M AU - Laymouna AH AU - Ricci F AU - Cardinale F AU - Jahnzrozyk K AU - Tosi GM AU - Crisafulli F AU - Balistreri A AU - Dagostin MA AU - Ghanema M AU - Gaggiano C AU - Sota J AU - Di Cola I AU - Fabiani C AU - Giardini HAM AU - Renieri A AU - Fabbiani A AU - Carrer A AU - Bocchia M AU - Caroni F AU - Rigante D AU - Cantarini L TI - Development and Implementation of the Aida International Registry for Patients With Vexas Syndrome JO - Frontiers in Medicine VL - 9 IS - SP - EP - PY - 2022 ER -

Style

Citing Format

MLA

Vitale A, et al.. "Development and Implementation of the Aida International Registry for Patients With Vexas Syndrome." Frontiers in Medicine, vol. 9, no. , 2022, pp. -.

APA

Vitale A, Caggiano V, Della Casa F, Hernandezrodriguez 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, ... Cantarini L (2022). Development and Implementation of the Aida International Registry for Patients With Vexas Syndrome. Frontiers in Medicine, 9(), -.

Chicago

Vitale A, Caggiano V, Della Casa F, Hernandezrodriguez J, Frassi M, Monti S, Tufan A, et al.. "Development and Implementation of the Aida International Registry for Patients With Vexas Syndrome." Frontiers in Medicine 9, no. (2022): -.

Harvard

Vitale A et al. (2022) 'Development and Implementation of the Aida International Registry for Patients With Vexas Syndrome', Frontiers in Medicine, 9(), pp. -.

Vancouver

Vitale A, Caggiano V, Della Casa F, Hernandezrodriguez J, Frassi M, Monti S, et al.. Development and Implementation of the Aida International Registry for Patients With Vexas Syndrome. Frontiers in Medicine. 2022;9():-.

BibTex

@article{ author = {Vitale A and Caggiano V and Della Casa F and Hernandezrodriguez J and Frassi M and Monti S and Tufan A and Telesca S and Conticini E and Ragab G and Lopalco G and Almaghlouth I and Pereira RMR and Yildirim D and Cattalini M and Marino A and Giani T and La Torre F and Ruscitti P and Aragona E and Wiesikszewczyk E and Del Giudice E and Sfikakis PP and Govoni M and Emmi G and Maggio MC and Giacomelli R and Ciccia F and Conti G and Aitidir D and Lomater C and Sabato V and Piga M and Sahin A and Oprisbelinski D and Ionescu R and Bartoloni E and Franceschini F and Parronchi P and De Paulis A and Espinosa G and Maier A and Sebastiani GD and Insalaco A and Shahram F and Sfriso P and Minoia F and Alessio M and Makowska J and Hatemi G and Akkoc N and Li Gobbi F and Gidaro A and Olivieri AN and Almayouf SM and Erten S and Gentileschi S and Vasi I and Tarsia M and Mahmoud AAMA and Frediani B and Fares Alzahrani M and Laymouna AH and Ricci F and Cardinale F and Jahnzrozyk K and Tosi GM and Crisafulli F and Balistreri A and Dagostin MA and Ghanema M and Gaggiano C and Sota J and Di Cola I and Fabiani C and Giardini HAM and Renieri A and Fabbiani A and Carrer A and Bocchia M and Caroni F and Rigante D and Cantarini L}, title = {Development and Implementation of the Aida International Registry for Patients With Vexas Syndrome}, journal = {Frontiers in Medicine}, volume = {9}, number = {}, pages = {-}, year = {2022} }

RIS

TY - JOUR
AU - Vitale A
AU - Caggiano V
AU - Della Casa F
AU - Hernandezrodriguez J
AU - Frassi M
AU - Monti S
AU - Tufan A
AU - Telesca S
AU - Conticini E
AU - Ragab G
AU - Lopalco G
AU - Almaghlouth I
AU - Pereira RMR
AU - Yildirim D
AU - Cattalini M
AU - Marino A
AU - Giani T
AU - La Torre F
AU - Ruscitti P
AU - Aragona E
AU - Wiesikszewczyk E
AU - Del Giudice E
AU - Sfikakis PP
AU - Govoni M
AU - Emmi G
AU - Maggio MC
AU - Giacomelli R
AU - Ciccia F
AU - Conti G
AU - Aitidir D
AU - Lomater C
AU - Sabato V
AU - Piga M
AU - Sahin A
AU - Oprisbelinski D
AU - Ionescu R
AU - Bartoloni E
AU - Franceschini F
AU - Parronchi P
AU - De Paulis A
AU - Espinosa G
AU - Maier A
AU - Sebastiani GD
AU - Insalaco A
AU - Shahram F
AU - Sfriso P
AU - Minoia F
AU - Alessio M
AU - Makowska J
AU - Hatemi G
AU - Akkoc N
AU - Li Gobbi F
AU - Gidaro A
AU - Olivieri AN
AU - Almayouf SM
AU - Erten S
AU - Gentileschi S
AU - Vasi I
AU - Tarsia M
AU - Mahmoud AAMA
AU - Frediani B
AU - Fares Alzahrani M
AU - Laymouna AH
AU - Ricci F
AU - Cardinale F
AU - Jahnzrozyk K
AU - Tosi GM
AU - Crisafulli F
AU - Balistreri A
AU - Dagostin MA
AU - Ghanema M
AU - Gaggiano C
AU - Sota J
AU - Di Cola I
AU - Fabiani C
AU - Giardini HAM
AU - Renieri A
AU - Fabbiani A
AU - Carrer A
AU - Bocchia M
AU - Caroni F
AU - Rigante D
AU - Cantarini L
TI - Development and Implementation of the Aida International Registry for Patients With Vexas Syndrome
JO - Frontiers in Medicine
VL - 9
IS -
SP -
EP -
PY - 2022
ER -

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