6533b852fe1ef96bd12aacd4
RESEARCH PRODUCT
Development and Implementation of the AIDA International Registry for Patients With Undifferentiated Systemic AutoInflammatory Diseases
Francesca Della CasaAntonio VitaleGiuseppe LopalcoPiero RuscittiFrancesco CicciaGiacomo EmmiMarco CattaliniEwa Wiesik-szewczykMaria Cristina MaggioBenson OgunjimiPetros P. SfikakisAbdurrahman TufanSulaiman M. Al-mayoufEmanuela Del GiudiceEmma AragonaFrancesco La TorreJurgen SotaSergio ColellaIlenia Di ColaDaniela IaconoIrene MattioliKarina Jahnz-rózykRik JoosKaterina LaskariCarla GaggianoAnna AbbruzzesePaola CiprianiGelsomina RozzaAlhanouf AlsaleemDerya YildirimMaria TarsiaGaafar RagabFrancesca RicciFabio CardinaleMarcelina KorzeniowskaMicol FrassiValeria CaggianoMoustafa Ali SaadRosa Maria PereiraVirginia BerlengieroStefano GentileschiSilvana GuerrieroTeresa GianiViviana GelardiFlorenzo IannoneHenrique Ayres Mayrink GiardiniIbrahim A. AlmaghlouthRiza Can KardasDjouher Ait-idirBruno FredianiAlberto BalistreriClaudia FabianiDonato RiganteLuca Cantarinisubject
RegistrySettore MED/16 - REUMATOLOGIAprecision medicinerare diseasesGeneral Medicinepersonalized medicineautoinflammatory diseasesInternational RegistrySettore MED/38 - Pediatria Generale E Specialisticaautoinflammatory diseaseAutoinflammationHuman medicineInternational Registry; autoinflammatory diseases; personalized medicine; precision medicine; rare diseasesautoinflammatory diseases; International Registry; personalized medicine; precision medicine; rare diseasesdescription
ObjectiveThis 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).MethodsThis 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.ResultsThe 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.ConclusionsThe 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. NCT 05200715 available at https://clinicaltrials.gov/.
| year | journal | country | edition | language |
|---|---|---|---|---|
| 2022-06-10 |