A prospective study of Thrombotic Thrombocytopenic Purpura in the UK

This is a UK based registry, involving all sites treating newly presenting Thrombotic Thrombocytopenic Purpura (TTP). From this registry, important epidemiological data will be obtained. Admission and remission samples will be collected. DNA will be collected and analysed from patients wishing to participate to determine if any link exists between mutations/polymorphisms and the risk of TTP.

As part of NHS commissioning, this study will be undertaking long term follow up, to understand the impact of acute TTP on morbidity and mortality.

• Inclusion Criteria : • Patients with a clinical diagnosis of acute TTP, defined by thrombocytopenia, MAHA which may be associated with clinical evidence of organ compromise. • No age restriction • Consent for addition to the Registry.
• Exclusion Criteria : • Causes of thrombocytopenia or MAHA other than TTP, such as including the Haemolytic Uraemic Syndrome (HUS), Disseminated Intravascular Coagulation (DIC), Pre-eclampsia (PET), Haemolysis, Elevated Liver Enzymes, Low Platelets (HEELP syndrome) or Antiphospholipid Syndrome (APLS). • Patients with cancer or transplant associated MAHA will not be included.
• Study start date : 25/02/2009
• Study end date : 31/12/2023
• Wales-Based Study Contact : Dr Rachel Rayment
• Principal Investigator : Dr Marie Scully

Contact details

University Hospital of Wales,Cardiff Rachel.Rayment@wales.nhs.uk