The United Kingdom Thrombotic Thrombocytopenic Purpura Registry (UK TTP Registry)
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|ClinicalTrials.gov Identifier: NCT03832881|
Recruitment Status : Recruiting
First Posted : February 6, 2019
Last Update Posted : February 6, 2019
|Condition or disease||Intervention/treatment|
|TTP - Thrombotic Thrombocytopenic Purpura||Diagnostic Test: ADAMTS13, VWF assay|
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.
|Study Type :||Observational|
|Estimated Enrollment :||1000 participants|
|Official Title:||The United Kingdom Thrombotic Thrombocytopenic Purpura Registry|
|Actual Study Start Date :||January 2009|
|Estimated Primary Completion Date :||November 2023|
|Estimated Study Completion Date :||November 2023|
- TTP incidence [ Time Frame: At study completion, approximately in 2023 ]Number of TTP cases in the UK each year
Biospecimen Retention: Samples With DNA
• A 5ml double spun citrate sample (platelet free plasma separated) taken on admission and/or pre-treatment. (Part of Standard Care).
In Remission/Approximately 3 months post admission:
- A 5ml double spun remission citrate sample (platelet free plasma separated) following discharge from the acute episode. (Part of Standard Care)
- A 5ml EDTA whole blood sample for DNA extraction. (Informed Consent from patient required).
- A 5ml serum sample. (Sample taken as part of Standard Care; Informed Consent required for storage and use of sample for current and future analysis of parameters related to TTP; Current tests include, IgG subtyping and Rituximab levels.)
To learn more about this study, you or your doctor may contact the study research staff using the contact information provided by the sponsor.
Please refer to this study by its ClinicalTrials.gov identifier (NCT number): NCT03832881
|Contact: I Obu||0207 679 email@example.com|