The Autoinflammatory Diseases Alliance Registry of monogenic autoinflammatory diseases

Carla Gaggiano; Antonio Vitale; Abdurrahman Tufan; Gaafar Ragab; Emma Aragona; Ewa Wiesik-Szewczyk; Djouher Ait-Idir; Giovanni Conti; Ludovica Iezzi; Maria Cristina Maggio; Marco Cattalini; Francesco La Torre; Giuseppe Lopalco; Elena Verrecchia; Amato de Paulis; Ali Sahin; Antonella Insalaco; Petros P. Sfikakis; Achille Marino; Micol Frassi; Benson Ogunjimi; Daniela Opris-Belinski; Paola Parronchi; Giacomo Emmi; Farhad Shahram; Francesco Ciccia; Matteo Piga; Jose Hernandez-Rodriguez; Rosa Maria R. Pereira; Maria Alessio; Roberta Naddei; Alma Nunzia Olivieri; Emanuela Del Giudice; Paolo Sfriso; Piero Ruscitti; Francesca Li Gobbi; Hamit Kucuk; Jurgen Sota; Mohamed A. Hussein; Giuseppe Malizia; Karina Jahnz-Rozyk; Rawda Sari-Hamidou; Mery Romeo; Francesca Ricci; Fabio Cardinale; Florenzo Iannone; Francesca Della Casa; Marco Francesco Natale; Katerina Laskari; Teresa Giani; Franco Franceschini; Vito Sabato; Derya Yildirim; Valeria Caggiano; Mohamed Tharwat Hegazy; Rosalba Di Marzo; Aleksandra Kucharczyk; Ghalia Khellaf; Maria Tarsia; Ibrahim A. Almaghlouth; Ahmed Hatem Laymouna; Violetta Mastrorilli; Laura Dotta; Luca Benacquista; Salvatore Grosso; Francesca Crisafulli; Veronica Parretti; Heitor F. Giordano; Ayman Abdel-Monem Ahmed Mahmoud; Rossana Nuzzolese; Marta De Musso; Cecilia Beatrice Chighizola; Stefano Gentileschi; Mirella Morrone; Ilenia Di Cola; Veronica Spedicato; Henrique A. Mayrink Giardini; Ibrahim Vasi; Alessandra Renieri; Alessandra Fabbiani; Maria Antonietta Mencarelli; Bruno Frediani; Alberto Balistreri; Gian Marco Tosi; Claudia Fabiani; Merav Lidar; Donato Rigante; Luca Cantarini

doi:10.3389/fmed.2022.980679

Back

The Autoinflammatory Diseases Alliance Registry of monogenic autoinflammatory diseases

Journal article

Open access

Peer reviewed

The Autoinflammatory Diseases Alliance Registry of monogenic autoinflammatory diseases

Carla Gaggiano, Antonio Vitale, Abdurrahman Tufan, Gaafar Ragab, Emma Aragona, Ewa Wiesik-Szewczyk, Djouher Ait-Idir, Giovanni Conti, Ludovica Iezzi, Maria Cristina Maggio, …

Frontiers in medicine, Vol.9, pp.980679-980679

09/09/2022

DOI: https://doi.org/10.3389/fmed.2022.980679

PMID: 36160138

Abstract

General & Internal Medicine

Life Sciences & Biomedicine

Medicine, General & Internal

Science & Technology

ObjectiveThe 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.MethodsThis 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.ResultsAIDA 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.ConclusionsThe 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 .

Files and links (1)

url

https://doi.org/10.3389/fmed.2022.980679View

Published (Version of record) Open

Metrics

1 Record Views

See more details

Details

Title: The Autoinflammatory Diseases Alliance Registry of monogenic autoinflammatory diseases
Creators - without role: Carla Gaggiano - University of Siena
Antonio Vitale - University of Siena
Abdurrahman Tufan - Gazi University
Gaafar Ragab - Cairo University
Emma Aragona - Ospedale Vincenzo Cervello
Ewa Wiesik-Szewczyk - Central Clinical Hospital
Djouher Ait-Idir - University of Boumerdes
Giovanni Conti - Azienda Ospedaliera Universitaria Policlinico "G. Martino"
Ludovica Iezzi - Agostino Gemelli University Polyclinic
Maria Cristina Maggio - University of Palermo
Marco Cattalini - Azienda Socio Sanitaria Territoriale degli Spedali Civili di Brescia
Francesco La Torre - University of Bari Aldo Moro
Giuseppe Lopalco - University of Bari Aldo Moro
Elena Verrecchia - Università Cattolica del Sacro Cuore
Amato de Paulis - University of Naples Federico II
Ali Sahin - Sivas Cumhuriyet Üniversitesi
Antonella Insalaco - Bambino Gesù Children's Hospital
Petros P. Sfikakis - National and Kapodistrian University of Athens
Achille Marino - Istituto Ortopedico Gaetano Pini
Micol Frassi - University of Brescia
Benson Ogunjimi - Antwerp University Hospital
Daniela Opris-Belinski - Carol Davila University of Medicine and Pharmacy
Paola Parronchi - University of Florence
Giacomo Emmi - University of Florence
Farhad Shahram - Shariati Hospital
Francesco Ciccia - University of Campania "Luigi Vanvitelli"
Matteo Piga - University of Cagliari
Jose Hernandez-Rodriguez - Universitat de Barcelona
Rosa Maria R. Pereira - Hospital das Clínicas da Faculdade de Medicina da Universidade de São Paulo
Maria Alessio - University of Naples Federico II
Roberta Naddei - University of Naples Federico II
Alma Nunzia Olivieri - University of Campania "Luigi Vanvitelli"
Emanuela Del Giudice - Sapienza University of Rome
Paolo Sfriso - University of Padua
Piero Ruscitti - University of L'Aquila
Francesca Li Gobbi - Nuovo Ospedale San Giovanni di Dio
Hamit Kucuk - Gazi University
Jurgen Sota - University of Siena
Mohamed A. Hussein - Cairo University
Giuseppe Malizia - Ospedale Vincenzo Cervello
Karina Jahnz-Rozyk - Central Clinical Hospital
Rawda Sari-Hamidou - University of Abou Bekr Belkaïd
Mery Romeo - Azienda Ospedaliera Universitaria Policlinico "G. Martino"
Francesca Ricci - Azienda Socio Sanitaria Territoriale degli Spedali Civili di Brescia
Fabio Cardinale - Ospedale Pediatrico Giovanni XXIII
Florenzo Iannone - University of Bari Aldo Moro
Francesca Della Casa - University of Naples Federico II
Marco Francesco Natale - Bambino Gesù Children's Hospital
Katerina Laskari - National and Kapodistrian University of Athens
Teresa Giani - Istituto Ortopedico Gaetano Pini
Franco Franceschini - University of Brescia
Vito Sabato - Antwerp University Hospital
Derya Yildirim - Gazi University
Valeria Caggiano - University of Siena
Mohamed Tharwat Hegazy - Cairo University
Rosalba Di Marzo - Div Ematol II, Ospedali Riuniti Villa Sofia Vincenzo Cervello, Palermo, Italy
Aleksandra Kucharczyk - Central Clinical Hospital
Ghalia Khellaf - University of Algiers Benyoucef Benkhedda
Maria Tarsia - University of Siena
Ibrahim A. Almaghlouth - King Saud University
Ahmed Hatem Laymouna - Cairo University
Violetta Mastrorilli - University of Bari Aldo Moro
Laura Dotta - Azienda Socio Sanitaria Territoriale degli Spedali Civili di Brescia
Luca Benacquista - Agostino Gemelli University Polyclinic
Salvatore Grosso - University of Siena
Francesca Crisafulli - University of Brescia
Veronica Parretti - University of Siena
Heitor F. Giordano - Hospital das Clínicas da Faculdade de Medicina da Universidade de São Paulo
Ayman Abdel-Monem Ahmed Mahmoud - Cairo University
Rossana Nuzzolese - University of Siena
Marta De Musso - University of Siena
Cecilia Beatrice Chighizola - University of Milan
Stefano Gentileschi - Azienda Ospedaliera Universitaria Senese
Mirella Morrone - University of Bari Aldo Moro
Ilenia Di Cola - Univ Aquila, Dept Biotechnol & Appl Clin Sci, Rheumatol Unit, Laquila, Italy
Veronica Spedicato - University of Bari Aldo Moro
Henrique A. Mayrink Giardini - Hospital das Clínicas da Faculdade de Medicina da Universidade de São Paulo
Ibrahim Vasi - Gazi University
Alessandra Renieri - University of Siena
Alessandra Fabbiani - University of Siena
Maria Antonietta Mencarelli - Azienda Ospedaliera Universitaria Senese
Bruno Frediani - Azienda Ospedaliera Universitaria Senese
Alberto Balistreri - University of Siena
Gian Marco Tosi - University of Siena
Claudia Fabiani - University of Siena
Merav Lidar - Sheba Medical Center
Donato Rigante - Università Cattolica del Sacro Cuore
Luca Cantarini - University of Siena
Publication Details: Frontiers in medicine, Vol.9, pp.980679-980679
Publisher: Frontiers Media Sa
Number of pages: 12
Identifiers: 9950984208331
Academic Unit: King Saud University; King Fahd University of Petroleum & Minerals
Language: English
Resource Type: Journal article