The AutoInflammatory Diseases Alliance Registry of monogenic autoinflammatory diseases

C Gaggiano, A Vitale, A Tufan, G Ragab, E Aragona, E Wiesik-Szewczyk, D Ait-Idir, Ludovica Iezzi, Mc Maggio, M Cattalini, F La Torre, G Lopalco, Elena Verrecchia, A de Paulis, A Sahin, A Insalaco, Pp Sfikakis, A Marino, M Frassi, B OgunjimiD Opris-Belinski, P Parronchi, G Emmi, F Shahram, F Ciccia, M Piga, J Hernández-Rodríguez, Rmr Pereira, M Alessio, R Naddei, An Olivieri, Ed Giudice, P Sfriso, P Ruscitti, Fl Gobbi, H Kucuk, J Sota, Ma Hussein, G Malizia, K Jahnz-Różyk, R Sari-Hamidou, M Romeo, F Ricci, F Cardinale, F Iannone, Fd Casa, Mf Natale, K Laskari, T Giani, F Franceschini, V Sabato, D Yildirim, V Caggiano, Mt Hegazy, Rd Marzo, A Kucharczyk, G Khellaf, M Tarsia, Ia Almaghlouth, Ah Laymouna, V Mastrorilli, L Dotta, Luca Benacquista, S Grosso, F Crisafulli, V Parretti, Hf Giordano, Aaa Mahmoud, R Nuzzolese, M Musso, Cb Chighizola, S Gentileschi, M Morrone, Id Cola, V Spedicato, Ham Giardini, I Vasi, A Renieri, A Fabbiani, Ma Mencarelli, B Frediani, A Balistreri, Gm Tosi, C Fabiani, M Lidar, Donato Rigante, L Cantarini, G Conti

Risultato della ricerca: Contributo in rivistaArticolo in rivista

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
Lingua originaleEnglish
pagine (da-a)1-12
Numero di pagine12
RivistaFrontiers in Medicine
Volume2022
DOI
Stato di pubblicazionePubblicato - 2022

Keywords

  • Autoinflammatory diseases
  • Registry

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