NCT03832881

The United Kingdom Thrombotic Thrombocytopenic Purpura Registry (UK TTP Registry)

The United Kingdom Thrombotic Thrombocytopenic Purpura Registry

• Status: Unknown
• Phase: —
• Study type: Observational
• Enrollment: 1,000 (estimated)
• Sponsor: University College, London · Academic / Other
• Sex: All
• Age: —
• Healthy volunteers: Not accepted

Summary

This is a UK (United Kingdom) 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, we will be undertaking long term follow up, to understand the impact of acute TTP on morbidity and mortality.

Detailed description

The UK TTP registry started in January 2009, following 3 years MRC funding, involving UK collaboration from all sites treating TTP patients. It has resulted in a cohort of data and samples from UK TTP cases. The registry promotes a collaborative approach with all UK patients and physicians involved with this life threatening disorder. The UK TTP registry has been used to provide information for highly specialist commissioning via NHS England and moving forward will be required to provide data relevant to the UK TTP Group and commissioners. University College London (UCL) Haemostasis Research Unit (HRU) will collect and collate the data and help administrate for those sites participating in the registry. However, ADAMTS13 assays will no longer be subsidised. For those sites undertaking local assays, a record of cases will be shared centrally. The UK TTP registry will be part of the UK TTP Group.

Conditions

• TTP - Thrombotic Thrombocytopenic Purpura

Interventions

Type	Name	Description
DIAGNOSTIC_TEST	ADAMTS13, VWF assay

Timeline

• Start date: 2009-01-01
• Primary completion: 2023-11-01
• Completion: 2023-11-01
• First posted: 2019-02-06
• Last updated: 2019-02-06

Locations

1 site across 1 country: United Kingdom