Coordinated by ERCI

Harmonization of ITP registries

Harmonization of ITP registries Harmonization of ITP registries

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) and is meant to propose a harmonization of existing registries and to response the need of a European registry on ITP to analyze the discrepancies in treatment availability, increase the number of informative patients for specific investigations like the assessment of  risks of rare events and of real world use, effectiveness and safety of newly marketed ITP drugs, and to facilitate the selection of patients in clinical trials

The project is coordinated by ERCI founding member Guillaume Moulis, from the Department of Internal Medicine, Toulouse University Hospital, France.