Portuguese Haemophilia Registry

Area of Science:

• Medical Informatics
• Hematology
• Public Health

Background:

• National Patient Registries (NPR) are vital for managing rare diseases like hemophilia.
• Effective data management is crucial for healthcare and research in inherited bleeding disorders.
• Accurate, centralized data collection prevents patient duplication and improves reliability.

Purpose of the Study:

• To introduce the newly developed computerized solution for the Portuguese National Registry of Haemophilia and other Congenital Coagulopathies (PorR H&CC).
• To detail the main variables and information captured by the PorR H&CC software.
• To establish a reliable national registry for hemophilia patients in Portugal.

Main Methods:

• Development of a dedicated computer software application for data entry and management.
• Implementation of data collection based on World Federation of Hemophilia (WFH) principles.
• Establishment of a secure, anonymized database compliant with Data Protection Law.

Main Results:

• The protocol for the PorR H&CC software has been approved.
• Sociodemographic, clinical, and treatment data variables have been defined.
• Initial data is now available within the application.

Conclusions:

• The PorR H&CC software represents a significant advancement for hemophilia patient management in Portugal.
• Continuous data entry is essential for comprehensive characterization of the hemophilia population.
• The registry will support improved healthcare and research for inherited bleeding disorders.