title: Portuguese Haemophilia Registry. Set of variables for a computerized solution.
abstract: 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 socio-demographic, 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.
authors: Leonor Teixeira, University of Aveiro, Campus Universitário de Santiago, 3810-193 Aveiro -Portugal, Tel. +351/234/370-361, Fax -215, E-mail: lteixeira@ua.pt.
authors: Leonor
authors: L
authors: Teixeira
authors: Vasco
authors: V
authors: Saavedra
authors: Beatriz
authors: B
authors: Sousa Santos
authors: Carlos
authors: C
authors: Ferreira
mesh_terms: D003219:Confidentiality; D003628:Database Management Systems / Q000458:organization & administration*; D016208:Databases, Factual; D006467:Hemophilia A / Q000175:diagnosis / Q000453:epidemiology* / Q000628:therapy; D006801:Humans; D016247:Information Storage and Retrieval / Q000379:methods*; D008498:Medical Record Linkage / Q000379:methods*; D016347:Medical Records Systems, Computerized / Q000458:organization & administration*; D011174:Portugal / Q000453:epidemiology; D012042:Registries
keywords: Haemophilia; Portugal; hemo@record; inherited bleeding disorders; national registry