The Autoinflammatory Diseases Alliance Registry of Monogenic Autoinflammatory Diseases

The Autoinflammatory Diseases Alliance Registry of Monogenic Autoinflammatory Diseases Publisher

Gaggiano C¹ ; Vitale A¹ ; Tufan A² ; Ragab G^{3, 4} ; Aragona E⁵ ; Wiesikszewczyk E⁶ ; Aitidir D⁷ ; Conti G⁸ ; Iezzi L⁹ ; Maggio MC¹⁰ ; Cattalini M¹¹ ; Torre FL¹² ; Lopalco G¹³ ; Verrecchia E^{14, 15} Show All Authors

Gaggiano C¹
Vitale A¹
Tufan A²
Ragab G^{3, 4}
Aragona E⁵
Wiesikszewczyk E⁶
Aitidir D⁷
Conti G⁸
Iezzi L⁹
Maggio MC¹⁰
Cattalini M¹¹
Torre FL¹²
Lopalco G¹³
Verrecchia E^{14, 15}
Paulis AD^{16, 17}
Sahin A¹⁸
Insalaco A¹⁹
Sfikakis PP²⁰
Marino A²¹
Frassi M²²
Ogunjimi B^{23, 24, 25, 26}
Oprisbelinski D²⁷
Parronchi P²⁸
Emmi G²⁸
Shahram F²⁹
Ciccia F³⁰
Piga M³¹
Hernandezrodriguez J³²
Pereira RMR³³
Alessio M³⁴
Naddei R³⁴
Olivieri AN³⁵
Giudice ED³⁶
Sfriso P³⁷
Ruscitti P³⁸
Gobbi FL³⁹
Kucuk H²
Sota J¹
Hussein MA³
Malizia G⁵
Jahnzrozyk K⁶
Sarihamidou R⁴⁰
Romeo M⁸
Ricci F¹¹
Cardinale F¹²
Iannone F¹³
Casa FD¹⁶
Natale MF¹⁹
Laskari K²⁰
Giani T²¹
Franceschini F²²
Sabato V⁴¹
Yildirim D²
Caggiano V¹
Hegazy MT^{3, 4}
Marzo RD⁴²
Kucharczyk A⁶
Khellaf G⁴³
Tarsia M¹
Almaghlouth IA^{44, 45}
Laymouna AH³
Mastrorilli V¹²
Dotta L¹¹
Benacquista L⁹
Grosso S⁴⁶
Crisafulli F²²
Parretti V¹
Giordano HF³³
Mahmoud AAMA³
Nuzzolese R¹
Musso MD¹
Chighizola CB^{47, 48}
Gentileschi S⁴⁹
Morrone M¹³
Cola ID³⁸
Spedicato V¹³
Giardini HAM³³
Vasi I²
Renieri A^{50, 51, 52}
Fabbiani A^{50, 51, 52}
Mencarelli MA⁵²
Frediani B⁴⁹
Balistreri A⁵³
Tosi GM⁵⁴
Fabiani C⁵⁴
Lidar M^{55, 56, 57}
Rigante D^{9, 14}
Cantarini L¹

Source: Frontiers in Medicine Published:2022

Abstract

Objective: The present manuscript aims to describe an international, electronic-based, user-friendly and interoperable patient registry for monogenic autoinflammatory diseases (mAIDs), developed in the contest of the Autoinflammatory Diseases Alliance (AIDA) Network. Methods: This is an electronic platform, based on the Research Electronic Data Capture (REDCap) tool, used for real-world data collection of demographics, clinical, laboratory, instrumental and socioeconomic data of mAIDs patients. The instrument has flexibility, may change over time based on new scientific acquisitions, and communicate potentially with other similar registries; security, data quality and data governance are corner stones of the platform. Results: AIDA project will share knowledge and expertise on mAIDs. Since its start, 118 centers from 24 countries and 4 continents have joined the AIDA project. Fifty-nine centers have already obtained the approval from their local Ethics Committees. Currently, the platform counts 337 users (122 Principal Investigators, 210 Site Investigators, 2 Lead Investigators, and 3 data managers). The Registry collects baseline and follow-up data using 3,748 fields organized into 21 instruments, which include demographics, patient history, symptoms, trigger/risk factors, therapies, and healthcare information for mAIDs patients. Conclusions: The AIDA mAIDs Registry, acts both as a research tool for future collaborative real-life studies on mAIDs and as a service to connect all the figures called to participate. On this basis, the registry is expected to play a pivotal role in generating new scientific evidence on this group of rare diseases, substantially improving the management of patients, and optimizing the impact on the healthcare system. NCT 05200715 available at https://clinicaltrials.gov. Copyright © 2022 Gaggiano, Vitale, Tufan, Ragab, Aragona, Wiesik-Szewczyk, Ait-Idir, Conti, Iezzi, Maggio, Cattalini, Torre, Lopalco, Verrecchia, Paulis, Sahin, Insalaco, Sfikakis, Marino, Frassi, Ogunjimi, Opris-Belinski, Parronchi, Emmi, Shahram, Ciccia, Piga, Hernandez-Rodriguez, Pereira, Alessio, Naddei, Olivieri, Giudice, Sfriso, Ruscitti, Gobbi, Kucuk, Sota, Hussein, Malizia, Jahnz-Rozyk, Sari-Hamidou, Romeo, Ricci, Cardinale, Iannone, Casa, Natale, Laskari, Giani, Franceschini, Sabato, Yildirim, Caggiano, Hegazy, Marzo, Kucharczyk, Khellaf, Tarsia, Almaghlouth, Laymouna, Mastrorilli, Dotta, Benacquista, Grosso, Crisafulli, Parretti, Giordano, Mahmoud, Nuzzolese, Musso, Chighizola, Gentileschi, Morrone, Cola, Spedicato, Giardini, Vasi, Renieri, Fabbiani, Mencarelli, Frediani, Balistreri, Tosi, Fabiani, Lidar, Rigante and Cantarini.

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Style	Citing Format
MLA	Gaggiano C, et al.. "The Autoinflammatory Diseases Alliance Registry of Monogenic Autoinflammatory Diseases." Frontiers in Medicine, vol. 9, no. , 2022, pp. -.
APA	Gaggiano C, Vitale A, Tufan A, Ragab G, Aragona E, Wiesikszewczyk E, Aitidir D, Conti G, Iezzi L, Maggio MC, Cattalini M, Torre FL, Lopalco G, Verrecchia E, Paulis AD, Sahin A, Insalaco A, Sfikakis PP, Marino A, ... Cantarini L (2022). The Autoinflammatory Diseases Alliance Registry of Monogenic Autoinflammatory Diseases. Frontiers in Medicine, 9(), -.
Chicago	Gaggiano C, Vitale A, Tufan A, Ragab G, Aragona E, Wiesikszewczyk E, Aitidir D, et al.. "The Autoinflammatory Diseases Alliance Registry of Monogenic Autoinflammatory Diseases." Frontiers in Medicine 9, no. (2022): -.
Harvard	Gaggiano C et al. (2022) 'The Autoinflammatory Diseases Alliance Registry of Monogenic Autoinflammatory Diseases', Frontiers in Medicine, 9(), pp. -.
Vancouver	Gaggiano C, Vitale A, Tufan A, Ragab G, Aragona E, Wiesikszewczyk E, et al.. The Autoinflammatory Diseases Alliance Registry of Monogenic Autoinflammatory Diseases. Frontiers in Medicine. 2022;9():-.
BibTex	@article{ author = {Gaggiano C and Vitale A and Tufan A and Ragab G and Aragona E and Wiesikszewczyk E and Aitidir D and Conti G and Iezzi L and Maggio MC and Cattalini M and Torre FL and Lopalco G and Verrecchia E and Paulis AD and Sahin A and Insalaco A and Sfikakis PP and Marino A and Frassi M and Ogunjimi B and Oprisbelinski D and Parronchi P and Emmi G and Shahram F and Ciccia F and Piga M and Hernandezrodriguez J and Pereira RMR and Alessio M and Naddei R and Olivieri AN and Giudice ED and Sfriso P and Ruscitti P and Gobbi FL and Kucuk H and Sota J and Hussein MA and Malizia G and Jahnzrozyk K and Sarihamidou R and Romeo M and Ricci F and Cardinale F and Iannone F and Casa FD and Natale MF and Laskari K and Giani T and Franceschini F and Sabato V and Yildirim D and Caggiano V and Hegazy MT and Marzo RD and Kucharczyk A and Khellaf G and Tarsia M and Almaghlouth IA and Laymouna AH and Mastrorilli V and Dotta L and Benacquista L and Grosso S and Crisafulli F and Parretti V and Giordano HF and Mahmoud AAMA and Nuzzolese R and Musso MD and Chighizola CB and Gentileschi S and Morrone M and Cola ID and Spedicato V and Giardini HAM and Vasi I and Renieri A and Fabbiani A and Mencarelli MA and Frediani B and Balistreri A and Tosi GM and Fabiani C and Lidar M and Rigante D and Cantarini L}, title = {The Autoinflammatory Diseases Alliance Registry of Monogenic Autoinflammatory Diseases}, journal = {Frontiers in Medicine}, volume = {9}, number = {}, pages = {-}, year = {2022} }
RIS	TY - JOUR AU - Gaggiano C AU - Vitale A AU - Tufan A AU - Ragab G AU - Aragona E AU - Wiesikszewczyk E AU - Aitidir D AU - Conti G AU - Iezzi L AU - Maggio MC AU - Cattalini M AU - Torre FL AU - Lopalco G AU - Verrecchia E AU - Paulis AD AU - Sahin A AU - Insalaco A AU - Sfikakis PP AU - Marino A AU - Frassi M AU - Ogunjimi B AU - Oprisbelinski D AU - Parronchi P AU - Emmi G AU - Shahram F AU - Ciccia F AU - Piga M AU - Hernandezrodriguez J AU - Pereira RMR AU - Alessio M AU - Naddei R AU - Olivieri AN AU - Giudice ED AU - Sfriso P AU - Ruscitti P AU - Gobbi FL AU - Kucuk H AU - Sota J AU - Hussein MA AU - Malizia G AU - Jahnzrozyk K AU - Sarihamidou R AU - Romeo M AU - Ricci F AU - Cardinale F AU - Iannone F AU - Casa FD AU - Natale MF AU - Laskari K AU - Giani T AU - Franceschini F AU - Sabato V AU - Yildirim D AU - Caggiano V AU - Hegazy MT AU - Marzo RD AU - Kucharczyk A AU - Khellaf G AU - Tarsia M AU - Almaghlouth IA AU - Laymouna AH AU - Mastrorilli V AU - Dotta L AU - Benacquista L AU - Grosso S AU - Crisafulli F AU - Parretti V AU - Giordano HF AU - Mahmoud AAMA AU - Nuzzolese R AU - Musso MD AU - Chighizola CB AU - Gentileschi S AU - Morrone M AU - Cola ID AU - Spedicato V AU - Giardini HAM AU - Vasi I AU - Renieri A AU - Fabbiani A AU - Mencarelli MA AU - Frediani B AU - Balistreri A AU - Tosi GM AU - Fabiani C AU - Lidar M AU - Rigante D AU - Cantarini L TI - The Autoinflammatory Diseases Alliance Registry of Monogenic Autoinflammatory Diseases JO - Frontiers in Medicine VL - 9 IS - SP - EP - PY - 2022 ER -

Style

Citing Format

MLA

Gaggiano C, et al.. "The Autoinflammatory Diseases Alliance Registry of Monogenic Autoinflammatory Diseases." Frontiers in Medicine, vol. 9, no. , 2022, pp. -.

APA

Gaggiano C, Vitale A, Tufan A, Ragab G, Aragona E, Wiesikszewczyk E, Aitidir D, Conti G, Iezzi L, Maggio MC, Cattalini M, Torre FL, Lopalco G, Verrecchia E, Paulis AD, Sahin A, Insalaco A, Sfikakis PP, Marino A, ... Cantarini L (2022). The Autoinflammatory Diseases Alliance Registry of Monogenic Autoinflammatory Diseases. Frontiers in Medicine, 9(), -.

Chicago

Gaggiano C, Vitale A, Tufan A, Ragab G, Aragona E, Wiesikszewczyk E, Aitidir D, et al.. "The Autoinflammatory Diseases Alliance Registry of Monogenic Autoinflammatory Diseases." Frontiers in Medicine 9, no. (2022): -.

Harvard

Gaggiano C et al. (2022) 'The Autoinflammatory Diseases Alliance Registry of Monogenic Autoinflammatory Diseases', Frontiers in Medicine, 9(), pp. -.

Vancouver

Gaggiano C, Vitale A, Tufan A, Ragab G, Aragona E, Wiesikszewczyk E, et al.. The Autoinflammatory Diseases Alliance Registry of Monogenic Autoinflammatory Diseases. Frontiers in Medicine. 2022;9():-.

BibTex

@article{ author = {Gaggiano C and Vitale A and Tufan A and Ragab G and Aragona E and Wiesikszewczyk E and Aitidir D and Conti G and Iezzi L and Maggio MC and Cattalini M and Torre FL and Lopalco G and Verrecchia E and Paulis AD and Sahin A and Insalaco A and Sfikakis PP and Marino A and Frassi M and Ogunjimi B and Oprisbelinski D and Parronchi P and Emmi G and Shahram F and Ciccia F and Piga M and Hernandezrodriguez J and Pereira RMR and Alessio M and Naddei R and Olivieri AN and Giudice ED and Sfriso P and Ruscitti P and Gobbi FL and Kucuk H and Sota J and Hussein MA and Malizia G and Jahnzrozyk K and Sarihamidou R and Romeo M and Ricci F and Cardinale F and Iannone F and Casa FD and Natale MF and Laskari K and Giani T and Franceschini F and Sabato V and Yildirim D and Caggiano V and Hegazy MT and Marzo RD and Kucharczyk A and Khellaf G and Tarsia M and Almaghlouth IA and Laymouna AH and Mastrorilli V and Dotta L and Benacquista L and Grosso S and Crisafulli F and Parretti V and Giordano HF and Mahmoud AAMA and Nuzzolese R and Musso MD and Chighizola CB and Gentileschi S and Morrone M and Cola ID and Spedicato V and Giardini HAM and Vasi I and Renieri A and Fabbiani A and Mencarelli MA and Frediani B and Balistreri A and Tosi GM and Fabiani C and Lidar M and Rigante D and Cantarini L}, title = {The Autoinflammatory Diseases Alliance Registry of Monogenic Autoinflammatory Diseases}, journal = {Frontiers in Medicine}, volume = {9}, number = {}, pages = {-}, year = {2022} }

RIS

TY - JOUR
AU - Gaggiano C
AU - Vitale A
AU - Tufan A
AU - Ragab G
AU - Aragona E
AU - Wiesikszewczyk E
AU - Aitidir D
AU - Conti G
AU - Iezzi L
AU - Maggio MC
AU - Cattalini M
AU - Torre FL
AU - Lopalco G
AU - Verrecchia E
AU - Paulis AD
AU - Sahin A
AU - Insalaco A
AU - Sfikakis PP
AU - Marino A
AU - Frassi M
AU - Ogunjimi B
AU - Oprisbelinski D
AU - Parronchi P
AU - Emmi G
AU - Shahram F
AU - Ciccia F
AU - Piga M
AU - Hernandezrodriguez J
AU - Pereira RMR
AU - Alessio M
AU - Naddei R
AU - Olivieri AN
AU - Giudice ED
AU - Sfriso P
AU - Ruscitti P
AU - Gobbi FL
AU - Kucuk H
AU - Sota J
AU - Hussein MA
AU - Malizia G
AU - Jahnzrozyk K
AU - Sarihamidou R
AU - Romeo M
AU - Ricci F
AU - Cardinale F
AU - Iannone F
AU - Casa FD
AU - Natale MF
AU - Laskari K
AU - Giani T
AU - Franceschini F
AU - Sabato V
AU - Yildirim D
AU - Caggiano V
AU - Hegazy MT
AU - Marzo RD
AU - Kucharczyk A
AU - Khellaf G
AU - Tarsia M
AU - Almaghlouth IA
AU - Laymouna AH
AU - Mastrorilli V
AU - Dotta L
AU - Benacquista L
AU - Grosso S
AU - Crisafulli F
AU - Parretti V
AU - Giordano HF
AU - Mahmoud AAMA
AU - Nuzzolese R
AU - Musso MD
AU - Chighizola CB
AU - Gentileschi S
AU - Morrone M
AU - Cola ID
AU - Spedicato V
AU - Giardini HAM
AU - Vasi I
AU - Renieri A
AU - Fabbiani A
AU - Mencarelli MA
AU - Frediani B
AU - Balistreri A
AU - Tosi GM
AU - Fabiani C
AU - Lidar M
AU - Rigante D
AU - Cantarini L
TI - The Autoinflammatory Diseases Alliance Registry of Monogenic Autoinflammatory Diseases
JO - Frontiers in Medicine
VL - 9
IS -
SP -
EP -
PY - 2022
ER -

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