Background The minimum data set (MDS) is a collection of data elements to be grouped
using a standard approach to allow the use of data for clinical and research purposes …

Abstract Background The Brazilian Policy for Comprehensive Care for People with Rare
Diseases was implemented in 2014; however, national epidemiological data on rare …

Despite widespread growth in the use and complexity of web portals, insufficient attention is
paid to their quality. Thus, this paper aims to describe the validation process of the Brazilian …

Rare autoimmune diseases provoke immune system malfunctioning, which reacts and
damages the body's cells and tissues. They have a low prevalence, classified as complex …

This doctoral research aims to develop a governance model for digital health research data
to enhance the quality of collected data and translate research outcomes into an integrated …