TTP - Thrombotic Thrombocytopenic Purpura Clinical Trial
Official title:
The United Kingdom Thrombotic Thrombocytopenic Purpura Registry
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.
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.
;
| Status | Clinical Trial | Phase | |
|---|---|---|---|
| Recruiting |
NCT05571774 -
Construction of a Database for TTP
|
||
| Not yet recruiting |
NCT06376786 -
Italian iTTP Registry
|
||
| Recruiting |
NCT05950750 -
Turkey Thrombotic Thrombocytopenic Purpura Disease Registry: National Multicenter Study
|