Treffer: Rare Disease Monitoring Portal in Brazil: An Integrated Approach to Geographic and Clinical Data.

This study presents a web portal application development to improve the management of rare diseases (RD) in Brazil by integrating clinical and geographic data. The Brazilian National Network of Rare Diseases (RARAS) coordinates care but struggles with underfunding and regulatory issues. This portal, focusing on the Clinical Hospital of Ribeirão Preto, aims to optimize resource allocation and patient management by providing real-time data visualization and spatial analysis. Using Python, Streamlit, and other geoprocessing libraries, the portal allows for detailed analysis of patient flows between their cities of residence and healthcare centers, highlighting travel distances and characteristic distribution patterns of different RD groups. The results indicate a significant improvement in monitoring, planning, and formulating more effective public policies for RD patients. The analysis revealed that patients, on average, travel 76.01 km to receive care, with distances ranging from 0.004 km to 1,897.09 km. The tool facilitates the identification of bottlenecks in the healthcare system, promoting informed decision-making by health managers. [ABSTRACT FROM AUTHOR]