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UK Adult ITP Registry

What is ITP?

ITP is the abbreviaton for Immune Thrompocytopenic Purpura. 

Primary ITP is a rare bleeding diathesis, characterised by a platelet count <100x 109/L with an autoimmune aetiology.

It is a complex heterogeneous disease, the clinical features, severity and current treatment practices vary considerably. In order to identify subgroups or clusters of patients with shared attributes or outcomes a large study cohort is required. This will also allow the generation of statistically meaningful as well as valid and reliable research findings.

The UK Adult ITP Registry aims to collect data in order to understand the epidemiology, aetiology, prognosis, treatment and outcomes of people with primary ITP. The present extension of the Registry sets out to occupy a central position in primary ITP research and fill the gaps in existing literature by assessing the development of ITP throughout all stages of adult life. 

This extension adds a new subgroup: the prospective data collection regarding the management and outcome of pregnancy in patients with ITP to further our understanding of the epidemiology of ITP in pregnancy, pregnancy outcome and provide a prospective tool to guide evidence based consistent practice. The pregnancy ITP section will have Dr Sue Robinson Consultant Haematologist at Guy’s and St Thomas’ NHS Foundation Trust, as sub-investigator. Dr Robinson will handle any clinical enquiries which are relevant for this part of the Registry. 

Map of all the hospitals who have contributed to the Registry (sites in blue are active; sites in yellow are in follow up only; sites in red have closed): 

4 in 100,000The prevalence of Primary ITP in the UK

SignsPatients may present with bruising, bleeding and sometimes fatigue/tiredness

DrugsThere are many drugs available to treat the signs & symptoms of Primary ITP

Some drugs control the immune system; some boost platelet production