The Autoinflammatory Diseases Alliance Registry of monogenic autoinflammatory diseases.

ABSTRACT:

Objective

The 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.

Methods

This 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 stones of the platform.

Results

AIDA project will share knowledge and expert

SUBMITTER: Gaggiano C 

PROVIDER: S-EPMC9500177 | biostudies-literature | 2022

REPOSITORIES: biostudies-literature