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University Children’s Hospital Basel
T +41 61 704 12 12
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.
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 5th 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 6th expert meeting will be held in 2018 in Switzerland.
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Prof. Dr. med. Thomas Kühne - HR - Our staff - UKBB an independent, university-wide competence center for pediatric and adolescent medicine. Contact us!
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