0000000000729937

AUTHOR

Rawda Sari-hamidou

showing 1 related works from this author

The AutoInflammatory Diseases Alliance Registry of monogenic autoinflammatory diseases

2022

ObjectiveThe present manuscript aims to describe an international, electronic-based, user-friendly and interoperable patient registry for monogenic autoinflammatory diseases (mAIDs), developed in the contest of the Autoinflammatory Diseases Alliance (AIDA) Network.MethodsThis is an electronic platform, based on the Research Electronic Data Capture (REDCap) tool, used for real-world data collection of demographics, clinical, laboratory, instrumental and socioeconomic data of mAIDs patients. The instrument has flexibility, may change over time based on new scientific acquisitions, and communicate potentially with other similar registries; security, data quality and data governance are corner …

RegistrySettore MED/38 - Pediatria Generale E SpecialisticaSettore MED/16 - REUMATOLOGIAautoinflammatory diseaseprecision medicineAutoinflammatory diseasesrare diseasesHuman medicinepersonalized medicineGeneral Medicinerare diseases.autoinflammatory diseases; international registry; personalized medicine; precision medicine; rare diseasesinternational registry
researchProduct