Development and Implementation of the AIDA International Registry for Patients With Undifferentiated Systemic AutoInflammatory Diseases

Frontiers in Medicine

article

Francesca Della Casa¹  Antonio Vitale²  Giuseppe Lopalco³  Piero Ruscitti⁴  Francesco Ciccia⁵  Giacomo Emmi⁶  Marco Cattalini⁷  Ewa Wiesik-Szewczyk⁸  Maria Cristina Maggio⁹  Benson Ogunjimi^1,10  Petros P. Sfikakis^1,14  Abdurrahman Tufan^1,15  Sulaiman M. Al-Mayouf^1,16  Emanuela Del Giudice^1,17  Emma Aragona^1,18  Francesco La Torre^1,19  Jurgen Sota²  Sergio Colella³  Ilenia Di Cola⁴  Daniela Iacono⁵  Irene Mattioli⁶  Karina Jahnz-Rózyk⁸  Rik Joos^1,10  Katerina Laskari^1,14  Carla Gaggiano²  Anna Abbruzzese³  Paola Cipriani⁴  Gelsomina Rozza⁵  Alhanouf AlSaleem^2,20  Derya Yildirim^1,15  Maria Tarsia²  Gaafar Ragab^2,21  Francesca Ricci⁷  Fabio Cardinale^1,19  Marcelina Korzeniowska⁸  Micol Frassi^2,23  Valeria Caggiano²  Moustafa Ali Saad^2,21  Rosa Maria Pereira^2,24  Virginia Berlengiero²  Stefano Gentileschi^2,25  Silvana Guerriero^2,26  Teresa Giani^2,27  Viviana Gelardi²  Florenzo Iannone³  Henrique Ayres Mayrink Giardini^2,24  Ibrahim A. Almaghlouth^2,28  Riza Can Kardas^1,15  Djouher Ait-Idir^3,30  Bruno Frediani^2,25  Alberto Balistreri^3,31  Claudia Fabiani^3,32  Donato Rigante^3,33  Luca Cantarini² 

[1] Department of Translational Medical Sciences, Section of Clinical Immunology, University of Naples Federico II;Department of Medical Sciences, Research Center of Systemic Autoinflammatory Diseases and Behçet's Disease Clinic, Surgery and Neurosciences, University of Siena;Rheumatology Unit, Department of Emergency and Organ Transplantation, University of Bari;Rheumatology Unit, Department of Biotechnological and Applied Clinical Sciences, University of L'Aquila;Department of Precision Medicine, Università Degli Studi Della Campania Luigi Vanvitelli;Department of Experimental and Clinical Medicine, University of Florence;Pediatric Clinic, University of Brescia and Spedali Civili di Brescia;Department of Internal Medicine, Pulmonology, Allergy and Clinical Immunology, Central Clinical Hospital of the Ministry of National Defence, Military Institute of Medicine;University Department PROMISE “G. D'Alessandro”, University of Palermo;Department of Pediatrics, Antwerp University Hospital;Center for Health Economics Research and Modeling Infectious Diseases ,(CHERMID), Vaccine & Infectious Diseases Institute ,(VAXINFECTIO), University of Antwerp;Department of Rheumatology;KidZ Health Castle, Universitair Ziekenhuis Brussel;Joint Academic Rheumatology Program, National and Kapodistrian University of Athens Medical School;Division of Rheumatology, Department of Internal Medicine, Gazi University Faculty of Medicine;King Faisal Specialist Hospital and Research Center;Department of Maternal Infantile and Urological Sciences, Sapienza University of Rome;Division of Gastroenterology, Ospedali Riuniti Villa Sofia-Vincenzo Cervello;Department of Pediatrics, Pediatric Rheumatology Center, Ospedale “Giovanni XXIII”, AOU Consorziale Policlinico;Department of Pediatrics King Faisal Specialist Hospital and Research Center Riyadh;Internal Medicine Department, Rheumatology and Clinical Immunology Unit, Faculty of Medicine, Cairo University;Faculty of Medicine, Newgiza University;Rheumatology and Clinical Immunology, Spedali Civili and Department of Clinical and Experimental Sciences, University of Brescia;Rheumatology Division, Hospital das Clinicas ,(HCFMUSP), Faculdade de Medicina, Universidade de São Paulo;Unit of Rheumatology, Azienda Ospedaliero-Universitaria Senese;Department of Ophthalmology and Otolaryngology, University of Bari;Department of Clinical Sciences and Community Health, Research Center for Adult and Pediatric Rheumatic Diseases, ASST G. Pini-CTO, University of Milan;Rheumatology Unit, Department of Medicine, College of Medicine, King Saud University;College of Medicine Research Center, College of Medicine, King Saud University;Research Laboratory, Biodiversity, Biotechnology, Environment and Sustainable Development, Department of Biology, Faculty of Sciences, M'Hamed Bougara University;Bioengineering and Biomedical Data Science Lab, Department of Medical Biotechnologies, University of Siena;Ophthalmology Unit, Department of Medicine, Surgery and Neurosciences, University of Siena;Department of Life Sciences and Global Health, Fondazione Policlinico Universitario A. Gemelli IRCCS;Rare Diseases and Periodic Fevers Research Centre, Università Cattolica del Sacro Cuore

关键词: autoinflammatory diseases;    personalized medicine;    precision medicine;    rare diseases;    International Registry;   

DOI  :  10.3389/fmed.2022.908501

学科分类：社会科学、人文和艺术（综合）

来源: Frontiers

【 摘 要 】

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 by Undifferentiated Systemic AutoInflammatory Diseases (USAIDs). Methods This is an electronic 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 designed to obtain standardized information for real-life research. The instrument is endowed with flexibility, and it could change over time according to the scientific acquisitions and potentially communicate with other similar tools; 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, 110 centers from 23 countries and 4 continents have joined the AIDA project. Fifty-four centers have already obtained the approval from their local Ethics Committees. Currently, the platform counts 290 users (111 Principal Investigators, 179 Site Investigators, 2 Lead Investigators, and 2 data managers). The Registry is collecting baseline and follow-up data using 3,769 fields organized into 23 instruments, which include demographics, history, symptoms, trigger/risk factors, therapies, and healthcare information access for USAIDs patients. Conclusions The development of the AIDA International Registry for USAIDs patients will facilitate the online collection of real standardized data, connecting a worldwide group of researchers: the Registry constitutes an international multicentre observational groundwork aimed at increasing the patient cohort of USAIDs in order to improve our knowledge of this peculiar cluster of autoinflammatory diseases.

【 授权许可】

CC BY