Publications by authors named "Heitor F Giordano"
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.
Background/objectives: Long-term efficacy and safety of tocilizumab (TCZ) in adult-onset Still's disease (AOSD) mostly derive from small case series. Herein we report a registry-based study investigating TCZ efficacy and safety in a cohort of patients with AOSD evaluated by clinical and serum inflammatory markers as well as drug retention rate analysis.
Methods: This is an international multicentre study analyzing data from patients with AOSD regularly enrolled in the AIDA registry.
Objective: Aim of this paper is to present the design, construction, and modalities of dissemination of the AutoInflammatory Disease Alliance (AIDA) International Registry for patients with systemic juvenile idiopathic arthritis (sJIA) and adult-onset Still's disease (AOSD), which are the pediatric and adult forms of the same autoinflammatory disorder.
Methods: This Registry is a clinical, physician-driven, population- and electronic-based instrument implemented for the retrospective and prospective collection of real-world data. The collection of data is based on the Research Electronic Data Capture (REDCap) tool and is intended to obtain evidence drawn from routine patients' management.
Article Synopsis
- The paper discusses the creation of the AIDA International Registry, aimed at tracking data for pediatric and adult patients with non-infectious uveitis.
- This registry collects a wide range of standardized information through a digital platform called REDCap, focusing on patient demographics, clinical data, and treatment details to enhance research quality.
- As of late 2021, 95 centers from 19 countries are participating, and the registry is expected to help in global research collaborations and improve understanding of non-infectious uveitis.
Article Synopsis
- - The article discusses the creation and implementation of a global registry by the AIDA Network to gather data from both pediatric and adult patients with immune-mediated scleritis.
- - Using the REDCap tool, the registry collects a wide range of data securely, while allowing for adaptability as scientific knowledge grows and enabling collaboration with other registries for sustainability.
- - Since its inception, the registry has engaged 99 centers across 20 countries, collecting comprehensive data to enhance research and improve clinical management of this rare ocular inflammatory condition.
Objective: To investigate the relationships between quality of life (QOL) and clinical and electroencephalogram (EEG) aspects in patients with Alzheimer's disease (AD).
Method: Twenty-eight patients with mild or moderate AD, 31 with Parkinson's disease (PD), and 27 normal controls (NC) were submitted to: CERAD neuropsychological battery, Hamilton Depression and Anxiety Rating Scales, Functional Activities Questionnaire, QOL scale for patients with AD, and quantitative EEG measures.
Results: AD and PD patients had similar QOL (31.