Category: Projects
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ERCI-IWG consensus on standardization of ITP terminology and definitions
In 2007 an International Working Group (IWG) of ITP experts came together to propose a standardized terminology on ITP, with the aim of establishing a common language that would have benefit research, knowledge sharing and ultimately patients. This effort resulted in the publication in 2009 of the paper “Standardization of terminology, definitions and outcome criteria…
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A retrospective study to evaluate the use of TPO-RA in adults with primary immune thrombocytopenia in Europe
This is a multicenter, retrospective, European study to evaluate the standards of use of thrombopoietin receptor agonists (TPO-RA) in adult patients with primary immune thrombocytopenia (ITP). Data will be collected through a retrospective chart review of patients with ITP who started TPO-RA treatment between January 2014 and December 2018. Each of the 18 designated sites…
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European ITP registries coordination
Registries are cornerstone sources of data in rare diseases like immune thrombocytopenia. The European Research Consortium on ITP (ERCI) defined some priority unmet needs as regards knowledge about epidemiology and pharmacoepidemiology of ITP in order to improve patient care. This project provides an overview of existing registries in Europe (both clinical registries and population-based cohorts)…