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The hemophilia patient registry in Italy is physician-run
and it was formerly (up to 1999) mantained through a collaboration between AICE and
Italian Ministry of Health (Istituto Superiore di Sanità, ISS). Since 2003 a new registry program
was directly operated by AICE, and contributors were adviced
to provide also data previously sent to the old registry. At the
beginning, a workgroup of Hemophilia
Treatment Centre Directors (HTCD) setted the
goals of the registry and established the set of main features of data to
be collected in order to determine the prevalence and the incidence of hemophilia, and its management and complications (e.g, demographics, bleeding rate, treatment
modalities, nature and type of complication such as HIV and HCV status,
development of
inhibitors, genetic characteristic, health care system
workload). The registry was conceived to be regularly updated, in order
to provide accurate data on patients affected by a chronic disease.
Hemophilia Treatment Centre (HTC) management software (EmoCard)
The HTCD plan to create a management software
intended both to collect data for the registry and to allow the clinical
and administrative management of the hemophilia
HCT. This program lead to EmoCard, a patient management
system developed by the AICE and widely adopted by all the HCT. EmoCard is aimed at supporting all the daily
activities of the HCT, and covering all the relevant fields of hemophilia management (ie,
basic demographics, family and patient history of disease, age of the hemophilia discovery, vaccination, physical
examination, HIV and HCV status, inhibitors, complete coagulation profile
and other laborathory data, molecular
diagnosis, objective testing, type and frequency of treatment, clinic
visit, hospitalization). EmoCard is password
protected, and it runs as a stand-alone or client server network distribuited program, available for major database
services (MS-SQL and Oracle).
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