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 in immune thrombocytopenic purpura of adults and children: report from an international working group”, which for the first time proposed the adoption of the term “Immune Thrombocytopenia” (ITP) and defined relevant outcomes and important aspects of the disease and its management.
The introduction of innovative drugs, in particular of TPO receptor agonists, and a better knowledge of ITP pathophysiology profoundly modified the clinical practice in ITP over the last 15 years and has made necessary an update of some of the previous definitions and terms, as well as the establishment of consensus on novel concepts.
The goal of this project is to produce a new standardization document, updated to the current knowledge and practice standards, using a modified Delphi method.
A Steering Committee (SC), composed by all ERCI founding members plus 5 major international ITP experts, has been formed and has started working on updated and novel definitions. The SC will soon produce a first draft of definitions and highlight areas of agreement and disagreement on different concepts.
Subsequently, a large international group of hematologists with expertise in ITP from North and South America, Europe, Asia, Africa and Australia, as well as patients advocates and representatives of EMA and FDA will be involved. The definitions drafted by the SC will finally be submitted to this large group of people in the form of a Delphi questionnaire to be further reviewed and improved with the aim of reaching a full consensus.
The project is coordinated by ERCI founding members and Co-chairs Prof. Francesco Rodeghiero (Hematology Project Foundation, Vicenza, Italy) and Prof. Cindy Neunert (Columbia University Medical Center, New York, US).