Objective: This paper points out the design, development and deployment of the AutoInflammatory Disease Alliance (AIDA) International Registry dedicated to pediatric and adult patients affected with Undifferentiated Systemic AutoInflammatory Diseases (USAIDs). Methods: This is a physician-driven, population- and electronic-based registry employed for real-world data collection about demographics, clinical, laboratory, instrumental and socioeconomic data of USAIDs patients. Data recruitment, based on the Research Electronic Data Capture (REDCap) tool, is thought to gain standardised information for real-life research and has been developed to change over time according to the scientific acquisitions and potentially communicate with other similar instruments; this platform ensures security, data quality and data governance. Results: The focus of the AIDA project is connecting physicians and researchers from all over the world to shed a new light on heterogeneous rare diseases. Since its birth, 99 centres from 20 countries and 4 continents have joined the AIDA project. Forty-eight centres have already obtained the approval from their local Ethics Committees. Currently, the platform counts 265 users (99 Principal Investigators, 162 Site Investigators, 2 Lead Investigators, and 2 data managers). The Registry is collecting baseline and follow-up data using 3357 fields organised into 23 instruments, which include demographics, history, symptoms, trigger/risk factors, therapies, and healthcare access for USAIDs patients. Conclusions: The development of the AIDA International Registry for USAIDs patients will facilitate the on-line collection of standardised data, connecting a worldwide group of researchers: the Registry constitutes an international multicentre observational groundwork aimed at increasing the study cohort of patients with USAIDs in order to improve our knowledge of this peculiar cluster of autoinflammatory diseases.
Della Casa, F., Vitale, A., Lopalco, G., Ruscitti, P., Ciccia, F., Emmi, G., Cattalini, M., Wiesik-Szewczyk, E., Maggio, M., Ogunjimi, B., Sfikakis, P., Tufan, A., Al-Mayouf, S., Del Giudice, E., Aragona, E., La Torre, F., Sota, J., Colella, S., Di Cola, I., Iacono, D., Mattioli, I., Jahnz-Rózyk, K., Joos, R., Laskari, K., Gaggiano, C., Abbruzzese, A., Cipriani, P., Rozza, G., Alsaleem, A., Yildirim, D., Tarsia, M., Ragab, G., Ricci, F., Cardinale, F., Korzeniowska, M., Frassi, M., Caggiano, V., Saad, M., Pereira, R., Berlengiero, V., Gentileschi, S., Guerriero, S., Giani, T., Gelardi, V., Iannone, F., Giardini, H., Almaghlouth, I., Kardas, R., Ait-Idir, D., Frediani, B., Balistreri, A., Fabiani, C., Rigante, D., Cantarini, L., Development and implementation of the AIDA International Registry for patients with undifferentiated systemic autoinflammatory diseases, <<FRONTIERS IN MEDICINE>>, 2022; 2022 (9; 908501): 1-10. [doi:10.3389/fmed.2022.908501] [http://hdl.handle.net/10807/211457]
Development and implementation of the AIDA International Registry for patients with undifferentiated systemic autoinflammatory diseases
Rigante, Donato;
2022
Abstract
Objective: This paper points out the design, development and deployment of the AutoInflammatory Disease Alliance (AIDA) International Registry dedicated to pediatric and adult patients affected with Undifferentiated Systemic AutoInflammatory Diseases (USAIDs). Methods: This is a physician-driven, population- and electronic-based registry employed for real-world data collection about demographics, clinical, laboratory, instrumental and socioeconomic data of USAIDs patients. Data recruitment, based on the Research Electronic Data Capture (REDCap) tool, is thought to gain standardised information for real-life research and has been developed to change over time according to the scientific acquisitions and potentially communicate with other similar instruments; this platform ensures security, data quality and data governance. Results: The focus of the AIDA project is connecting physicians and researchers from all over the world to shed a new light on heterogeneous rare diseases. Since its birth, 99 centres from 20 countries and 4 continents have joined the AIDA project. Forty-eight centres have already obtained the approval from their local Ethics Committees. Currently, the platform counts 265 users (99 Principal Investigators, 162 Site Investigators, 2 Lead Investigators, and 2 data managers). The Registry is collecting baseline and follow-up data using 3357 fields organised into 23 instruments, which include demographics, history, symptoms, trigger/risk factors, therapies, and healthcare access for USAIDs patients. Conclusions: The development of the AIDA International Registry for USAIDs patients will facilitate the on-line collection of standardised data, connecting a worldwide group of researchers: the Registry constitutes an international multicentre observational groundwork aimed at increasing the study cohort of patients with USAIDs in order to improve our knowledge of this peculiar cluster of autoinflammatory diseases.
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