TY - JOUR
T1 - The AutoInflammatory Diseases Alliance Registry of monogenic autoinflammatory diseases
AU - Gaggiano, Carla
AU - Vitale, Antonio
AU - Tufan, Abdurrahman
AU - Ragab, Gaafar
AU - Aragona, Emma
AU - Wiesik-Szewczyk, Ewa
AU - Ait-Idir, Djouher
AU - Conti, Giovanni
AU - Iezzi, Ludovica
AU - Maggio, Maria Cristina
AU - Cattalini, Marco
AU - Torre, Francesco La
AU - Lopalco, Giuseppe
AU - Verrecchia, Elena
AU - Paulis, Amato De
AU - Sahin, Ali
AU - Insalaco, Antonella
AU - Sfikakis, Petros P.
AU - Marino, Achille
AU - Frassi, Micol
AU - Ogunjimi, Benson
AU - Opris-Belinski, Daniela
AU - Parronchi, Paola
AU - Emmi, Giacomo
AU - Shahram, Farhad
AU - Ciccia, Francesco
AU - Piga, Matteo
AU - Hernández-Rodríguez, José
AU - Pereira, Rosa Maria R.
AU - Alessio, Maria
AU - Naddei, Roberta
AU - Olivieri, Alma Nunzia
AU - Giudice, Emanuela Del
AU - Sfriso, Paolo
AU - Ruscitti, Piero
AU - Gobbi, Francesca Li
AU - Kucuk, Hamit
AU - Sota, Jurgen
AU - Hussein, Mohamed A.
AU - Malizia, Giuseppe
AU - Jahnz-Różyk, Karina
AU - Sari-Hamidou, Rawda
AU - Romeo, Mery
AU - Ricci, Francesca
AU - Cardinale, Fabio
AU - Iannone, Florenzo
AU - Casa, Francesca Della
AU - Natale, Marco Francesco
AU - Laskari, Katerina
AU - Giani, Teresa
AU - Franceschini, Franco
AU - Sabato, Vito
AU - Yildirim, Derya
AU - Caggiano, Valeria
AU - Hegazy, Mohamed Tharwat
AU - Marzo, Rosalba Di
AU - Kucharczyk, Aleksandra
AU - Khellaf, Ghalia
AU - Tarsia, Maria
AU - Almaghlouth, Ibrahim A.
AU - Laymouna, Ahmed Hatem
AU - Mastrorilli, Violetta
AU - Dotta, Laura
AU - Benacquista, Luca
AU - Grosso, Salvatore
AU - Crisafulli, Francesca
AU - Parretti, Veronica
AU - Giordano, Heitor F.
AU - Mahmoud, Ayman Abdel-Monem Ahmed
AU - Nuzzolese, Rossana
AU - Musso, Marta De
AU - Chighizola, Cecilia Beatrice
AU - Gentileschi, Stefano
AU - Morrone, Mirella
AU - Cola, Ilenia Di
AU - Spedicato, Veronica
AU - Giardini, Henrique A. Mayrink
AU - Vasi, Ibrahim
AU - Renieri, Alessandra
AU - Fabbiani, Alessandra
AU - Mencarelli, Maria Antonietta
AU - Frediani, Bruno
AU - Balistreri, Alberto
AU - Tosi, Gian Marco
AU - Fabiani, Claudia
AU - Lidar, Merav
AU - Rigante, Donato
AU - Cantarini, Luca
PY - 2022
Y1 - 2022
N2 - 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
AB - 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
KW - Autoinflammatory diseases
KW - Registry
KW - Autoinflammatory diseases
KW - Registry
UR - http://hdl.handle.net/10807/221448
U2 - 10.3389/fmed.2022.980679
DO - 10.3389/fmed.2022.980679
M3 - Article
SN - 2296-858X
VL - 2022
SP - 1
EP - 12
JO - Frontiers in Medicine
JF - Frontiers in Medicine
ER -