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[The ESID Online Database for Primary Immunodeficiencies. First Analyses with Regard to Germany and Europe.]
Med Klin (Munich). 2008 Sep 15;103(9):620-7.
[Article in German]
Knerr V, Gathmann B, Eades-Perner AM, Kindle G, Grimbacher B.
Abteilung Rheumatologie und Klinische Immunologie, Universitätsklinik Freiburg, Freiburg, Germany.
BACKGROUND
AND METHODS: : Over the past 3 years, with support by the European
Union within the 6th Framework Programme and by the pharmaceutical
industry, the ESID Online Database has collected data from 7,047
patients with primary immunodeficiencies (PIDs) in 30 countries. The
system is available via a standard internet browser for users in
registered documenting centers with their personal login. It comprises
a common core dataset for 212 PIDs and large disease-specific data
models for 33 diseases. These can be used for international studies on
these cohorts.
RESULTS: : First analyses on the Therapy and Quality of
Life section have shown that 42% of the registered living patients
receive immunoglobulin replacement therapy. 76% of these receive
intravenous immunoglobulins (IVIG), whereas 23% use the subcutaneous
method of application (SCIG). In Germany, compared to the European
figures, SCIG therapy is much more common, reaching 54%, whereas 46% of
the patients receive IVIG. When analyzing the large cohort of patients
with common variable immunodeficiency (CVID), patients on SCIG have
less sick days and less days in hospital per year than those on IVIG.
CONCLUSION: : The acceptance of this new online system within Europe
has been positive over the last few years and the database has now
reached a state where it can be the basis for extensive international
studies. However, with 551 patients, Germany only contributes 7.81% of
the entered datasets. This is mainly due to a lack of time and manpower
in the documenting centers and to time-consuming procedures for ethics
approval.
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