6533b7d6fe1ef96bd12665dc
RESEARCH PRODUCT
Development and implementation of the AIDA International Registry for patients with Behçet's disease
A VitaleF Della CasaG RagabIa AlmaghlouthG LopalcoRm PereiraS GuerrieroM GovoniPp SfikakisR GiacomelliF CicciaS MontiP RuscittiM PigaC LomaterA TufanD Opris-belinskiG EmmiJ Hernández-rodríguezA ŞAhinGd SebastianiE BartoloniN AkkoçÖS GündüzM CattaliniGiorgio ContiG HatemiA MaierP ParronchiE Del GiudiceS ErtenA InsalacoF Li GobbiMc MaggioF ShahramV CaggianoMt HegazyKn AsfinaM MorroneLl PradoR DammaccoF RuffilliA AridaL NavariniI PantanoL CavagnaA ConfortiA CauliEm MaruccoH KucukR IonescuI MattioliG EspinosaO AraújoB KarkaşC CanofariJ SotaAh LaymounaAa BedaiwiS ColellaHam GiardiniV AlbanoA Lo MonacoGe FragoulisRc KardasV BerlengieroMa HusseinF RicciF La TorreDonato RiganteE Więsik-szewczykM FrassiS GentileschiGm TosiMa DagostinAaa MahmoudM TarsiaG AlessioR CimazT GianiC GaggianoF IannoneP CiprianiM MourabiV SpedicatoS BarneschiE AragonaA BalistreriB FredianiC FabianiL &Amp; Cantarini Autoinflammatory Diseases Alliance (Aida) Networksubject
AdultRegistrieAutoinflammatory diseaseRegistrySettore MED/16 - REUMATOLOGIAprecision medicinebehçet’s diseaseSettore MED/38 - Pediatria Generale E SpecialisticaRetrospective StudieInternal MedicineHumansProspective StudiesRegistriesChildinternational registryRetrospective StudiesBehçet's diseaseautoinflammatory diseases; behçet’s disease; international registry; precision medicine; rare diseases; uveitisBehcet Syndromerare diseasesautoinflammatory diseasesProspective StudieUveitiEmergency MedicineuveitisRare diseaseHumandescription
AbstractPurpose 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). The Registry is a clinical physician-driven non-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. Starting from January 31st, 2021, to February 7th, 2022, 110 centres from 23 countries in 4 continents have been involved. Fifty-four of these have already obtained the approval from their local Ethics Committees. Currently, the platform counts 290 users (111 Principal Investigators, 175 Site Investigators, 2 Lead Investigators, and 2 data managers). The Registry collects baseline and follow-up data using 5993 fields organised into 16 instruments, including patient’s demographics, history, clinical manifestations and symptoms, trigger/risk factors, therapies and healthcare access. 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.Trial registration NCT05200715 in 21/01/2022.
| year | journal | country | edition | language |
|---|---|---|---|---|
| 2022-07-14 |