@article{3347875,
    title = "The Autoinflammatory Diseases Alliance Registry of monogenic autoinflammatory diseases",
    author = "Gaggiano, C. and Vitale, A. and Tufan, A. and Ragab, G. and Aragona, E. and Wiesik-Szewczyk, E. and Ait-Idir, D. and Conti, G. and Iezzi, L. and Maggio, M.C. and Cattalini, M. and Torre, F.L. and Lopalco, G. and Verrecchia, E. and Paulis, A.D. and Sahin, A. and Insalaco, A. and Sfikakis, P.P. and Marino, A. and Frassi, M. and Ogunjimi, B. and Opris-Belinski, D. and Parronchi, P. and Emmi, G. and Shahram, F. and Ciccia, F. and Piga, M. and Hernández-Rodríguez, J. and Pereira, R.M.R. and Alessio, M. and Naddei, R. and Olivieri, A.N. and Giudice, E.D. and Sfriso, P. and Ruscitti, P. and Gobbi, F.L. and Kucuk, H. and Sota, J. and Hussein, M.A. and Malizia, G. and Jahnz-Różyk, K. and Sari-Hamidou, R. and Romeo, M. and Ricci, F. and Cardinale, F. and Iannone, F. and Casa, F.D. and Natale, M.F. and Laskari, K. and Giani, T. and Franceschini, F. and Sabato, V. and Yildirim, D. and Caggiano, V. and Hegazy, M.T. and Marzo, R.D. and Kucharczyk, A. and Khellaf, G. and Tarsia, M. and Almaghlouth, I.A. and Laymouna, A.H. and Mastrorilli, V. and Dotta, L. and Benacquista, L. and Grosso, S. and Crisafulli, F. and Parretti, V. and Giordano, H.F. and Mahmoud, A.A.-M.A. and Nuzzolese, R. and Musso, M.D. and Chighizola, C.B. and Gentileschi, S. and Morrone, M. and Cola, I.D. and Spedicato, V. and Giardini, H.A.M. and Vasi, I. and Renieri, A. and Fabbiani, A. and Mencarelli, M.A. and Frediani, B. and Balistreri, A. and Tosi, G.M. and Fabiani, C. and Lidar, M. and Rigante, D. and Cantarini, L. and The Autoinflammatory Diseases Alliance (AIDA) Network",
    journal = "Frontiers in Medicinal Chemistry - Online",
    year = "2022",
    volume = "9",
    publisher = "Frontiers Media S.A",
    issn = "1567-2042",
    doi = "10.3389/fmed.2022.980679",
    keywords = "Article;  autoinflammatory disease;  collaborative learning;  controlled study;  demographics;  family history;  female;  follow up;  human;  information processing;  information science;  major clinical study;  male;  medical history;  medical information;  monogenic disorder;  patient registry;  professional standard;  quality control;  risk factor;  symptom",
    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, Hernández-Rodríguez, Pereira, Alessio, Naddei, Olivieri, Giudice, Sfriso, Ruscitti, Gobbi, Kucuk, Sota, Hussein, Malizia, Jahnz-Różyk, 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."
}