Immune Trombocytopenia Research

Since its establishment by Paul Imbach and Thomas Kühne in 1997, the Intercontinental Cooperative ITP Study Group (ICIS)  promotes international research to study the autoimmune bleeding disorder immune thrombocytopenia (ITP). Primary ITP is of unknown etiology and characterized by a shortening of the platelet life-span caused by autoantibody-mediated destruction of platelets, decreased platelet production, and other processes.

The rarity of ITP (incidence 1-6 of 100,000 children per year) asks for international collaboration and careful use of resources. ICIS Registry I and II collected data of more than 4000 children with ITP. Based on this experience the Pediatric and Adult Registry on Chronic ITP (PARC-ITP Registry) was opened by ICIS in 2004 and accepts data from pediatric and adult patients with newly diagnosed ITP. Approximately 100 institutions from all continents are participating. DNA samples are collected prospectively. This registry is a rich data source of about 4000 patients with long-term data on demographics, natural history and management of ITP including efficacy and safety analysis of platelet enhancing drugs. Safety evaluation of new drugs, such as thrombopoietin receptor agonists, is included in the registry.

Interims analyses are regularly undertaken and results are presented at international hematology meetings and in scientific journals. ICIS Registry I and II are closed and several reports are published. The PARC-ITP Registry and the Splenectomy Registry will continue to enroll patients. Every third year an international expert meeting is organized by ICIS in Switzerland and meeting articles are published in scientific journals. The 5^th expert meeting was held in Flüeli, central Switzerland with the topic "immunomodulation and management in ITP and other autoimmune disorders". This successful meeting was published in Seminars in Hematology 2016. The 6^th expert meeting will be held in 2018 in Switzerland.