Objective: Purpose of the present paper is to point out the design, development and deployment of the AutoInflammatory Disease Alliance (AIDA) International Registry dedicated to pediatric and adult patients with Behçet’s disease (BD). Methods: The Registry is a clinical physician-driven population- and electronic-based instrument implemented for the retrospective and prospective collection of real-life data about demographics, clinical, therapeutic, laboratory, instrumental and socioeconomic information from BD patients; the Registry is based on the Research Electronic Data Capture (REDCap) tool, which is thought to collect standardised information for clinical real-life research, and has been realised to change over time according to future scientific acquisitions and potentially communicate with other existing and future Registries dedicated to BD. Results: Starting from January 31st to November 23rd, 2021, 99 centres from 20 countries in 4 continents have been involved. Forty-eight of these 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 collects baseline and follow-up data using 5474 fields organised into 15 instruments, including patient’s demographics, history, clinical manifestations and symptoms, trigger/risk factors, therapies and healthcare access. Conclusions: The development of the AIDA International Registry for BD patients will facilitate the collection of standardised data leading to real-world evidence, enabling international multicentre collaborative research through data sharing, international consultation, dissemination of knowledge, inclusion of patients and families, and ultimately optimisation of scientific efforts and implementation of standardised care.
Vitale, A., Della Casa, F., Ragab, G., Almaghlouth, I., Lopalco, G., Pereira, R., Guerriero, S., Govoni, M., Sfikakis, P., Giacomelli, R., Ciccia, F., Monti, S., Ruscitti, P., Piga, M., Lomater, C., Tufan, A., Opris-Belinski, D., Emmi, G., Hernández-Rodríguez, J., Şahin, A., Sebastiani, G., Bartoloni, E., Akkoç, N., Gündüz, Ö., Cattalini, M., Conti, G., Hatemi, G., Maier, A., Parronchi, P., Del Giudice, E., Erten, S., Insalaco, A., Li Gobbi, F., Maggio, M., Shahram, F., Caggiano, V., Hegazy, M., Asfina, K., Morrone, M., Prado, L., Dammacco, R., Ruffilli, F., Arida, A., Navarini, L., Pantano, I., Cavagna, L., Conforti, A., Cauli, A., Marucco, E., Kucuk, H., Ionescu, R., Mattioli, I., Espinosa, G., Araújo, O., Karkaş, B., Canofari, C., Sota, J., Laymouna, A., Bedaiwi, A., Colella, S., Giardini, H., Albano, V., Lo Monaco, A., Fragoulis, G., Kardas, R., Berlengiero, V., Hussein, M., Ricci, F., La Torre, F., Rigante, D., Więsik-Szewczyk, E., Frassi, M., Gentileschi, S., Tosi, G., Dagostin, M., Mahmoud, A., Tarsia, M., Alessio, G., Cimaz, R., Giani, T., Gaggiano, C., Iannone, F., Cipriani, P., Mourabi, M., Spedicato, V., Barneschi, S., Aragona, E., Balistreri, A., Frediani, B., Fabiani, C., Cantarini, L. &., Autoinflammatory Diseases Alliance (aida), N., Development and implementation of the AIDA International Registry for patients with Behçet's disease, <<INTERNAL AND EMERGENCY MEDICINE>>, 2022; 17 (7): 1977-1986. [doi:10.1007/s11739-022-03038-1] [https://hdl.handle.net/10807/221424]
Development and implementation of the AIDA International Registry for patients with Behçet's disease
Conti, Giorgio;Rigante, Donato;
2022
Abstract
Objective: Purpose of the present paper is to point out the design, development and deployment of the AutoInflammatory Disease Alliance (AIDA) International Registry dedicated to pediatric and adult patients with Behçet’s disease (BD). Methods: The Registry is a clinical physician-driven population- and electronic-based instrument implemented for the retrospective and prospective collection of real-life data about demographics, clinical, therapeutic, laboratory, instrumental and socioeconomic information from BD patients; the Registry is based on the Research Electronic Data Capture (REDCap) tool, which is thought to collect standardised information for clinical real-life research, and has been realised to change over time according to future scientific acquisitions and potentially communicate with other existing and future Registries dedicated to BD. Results: Starting from January 31st to November 23rd, 2021, 99 centres from 20 countries in 4 continents have been involved. Forty-eight of these 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 collects baseline and follow-up data using 5474 fields organised into 15 instruments, including patient’s demographics, history, clinical manifestations and symptoms, trigger/risk factors, therapies and healthcare access. Conclusions: The development of the AIDA International Registry for BD patients will facilitate the collection of standardised data leading to real-world evidence, enabling international multicentre collaborative research through data sharing, international consultation, dissemination of knowledge, inclusion of patients and families, and ultimately optimisation of scientific efforts and implementation of standardised care.
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