Development and implementation of the AIDA international registry for patients with Schnitzler's syndrome.

ABSTRACT:

Objective

The present paper describes the design, development, and implementation of the AutoInflammatory Disease Alliance (AIDA) International Registry specifically dedicated to patients with Schnitzler's syndrome.

Methods

This is a clinical physician-driven, population- and electronic-based registry implemented for the retrospective and prospective collection of real-life data from patients with Schnitzler's syndrome; the registry is based on the Research Electronic Data Capture (REDCap) tool, which is designed to collect standardized information for clinical research, and has been realized to change over time according to future scientific acquisitions and potentially communicate with other existing or future similar registries.

Results

Since its launch, 113 center

SUBMITTER: Sota J 

PROVIDER: S-EPMC9339622 | biostudies-literature | 2022

REPOSITORIES: biostudies-literature