Portuguese Haemophilia Registry

 

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Summary

National Patient Registries (NPR) have an important role in the management of haemophilia and other inherited bleeding disorders, representing powerful instruments to support healthcare and research. Computer software to assist the NPR is crucial, as it facilitates the introduction of the data from a national universe that will be centralized and merged into a unique location, thus ensuring a greater reliability and accuracy of the collected data, avoiding duplication of patients. In Portugal, despite the efforts and recognition of the need of a NPR, just recently the protocol for the establishment of the computer software to support the Portuguese National Registry of Haemophilia and other Congenital Coagulopathies (PorR H&CC) was approved. This paper aims to present this newly developed computerized solution, as well as to report the main variables and information that will be available. The development of this application, which includes a set of sociodemographic, clinical and treatment data, was based on the principles of WFH, and the database that supports the NPR, with anonymized data, is operated and maintained in accordance with the Data Protection Law. Currently, the first data are available on the application. Our focus now is to ensure more registries and continuous data entry in order to have complete information on the characterization of the haemophilia patient population in Portugal.

Zusammenfassung

Nationale Patientenregister (NPR) spielen eine wichtige Rolle für das Management der Hämophilie und anderer angeborener Hämostasestörungen, indem sie machtvolle Instrumente zur Unterstützung des Gesundheitswesens sowie der Forschung darstellen. Computer-software zur Unterstützung der NPR ist wesentlich, da es die Eingabe von Daten aus einem nationalen Universum erleichtert, die in einer einzigen Stelle zentralisiert und zusammengefasst werden, und somit in höheres Maß an Reliabilität und Genauigkeit der Daten sicherstellt, indem die doppelte Aufführung von Patienten verhindert wird. Trotz vieler Bemühungen und der Anerkennung der Notwendigkeit eines NPR in Portugal, wurde erst vor kurzem ein Protokoll zur Erstellung von Computer-software zur Unterstützung des Portugiesischen Nationalregisters der Hämophilen und Betroffener anderer angeborener Gerinnungsstörungen (PorR-H&CC) bewilligt. Dieser Artikel stellt diese Computerunterstützte Lösung vor sowie die wichtigsten Variablen und Informationen, die zur Verfügung gestellt wird. Die Entwicklung dieser Anwendung, die eine Reihe soziodemografischer, klinischer und Behandlungsdaten beinhaltet, basiert auf den Grundlagen des WFH und der Datenbank, die das NPR mit anonymen Daten unterstützt und gemäß den Vorgaben des Datenschutzrechts verwaltet wird. Zurzeit stehen die ersten Daten zur Verfügung. Der Schwerpunkt liegt nun darin, mehr Register sowie eine kontinuierliche Dateneingabe zur Charakterisierung der hämophilen Patienten Portugals sicherzustellen.

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