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The United Kingdom Thrombotic Thrombocytopenic Purpura Registry (TTP Registry)

Contact phone number: Dr Biss: 0191 282 4743

Why is this study important? 

TTP is a rare but serious problem where tiny clots form in the body’s organs. Often it is caused by reduced levels of an enzyme called ADAMTS13.

What is the aim of this study? 

The aim is to collect information about TTP such as: how many people get TTP, what treatments are given and how successful they are.

What do people in this study have to do? 

Information about your TTP would be collected from your medical notes. We would take blood samples to see if any genes are more common in people with TTP, test for ADAMTS13 and to see if other tests can be developed to detect TTP

What are the risks and benefits for participants? 

The information from this study may help us to increase our understanding and improve future treatment for patients with TTP.

For further information about this study please follow link

Dr Biss: 0191 282 4743

Recruitment to this study is due to end on:

Dec 2018

A summary of the study findings should be available by:

Information from the trial will be presented at local, national and international meetings. The information will also be presented at patient TTP meeting(s). The ultimate collection of information will be submitted to a peer-reviewed journal.

Clinical Trials in Haematology

Select a trial from the list below to find out more about what it’s all about and how you can get involved in helping others.

Anticoagulation Therapy in SELECTeD Cancer Patients at Risk of Recurrence of Venous Thromboembolism

The study is for patients with cancer who have been on a blood-thinner for a new clot for less than 3 days (and fit other criteria).

UK Adult Idiopathic Thrombocytopenic Purpura (ITP) Registry

This is a registry study that is aiming to recruit hundreds of individuals with ITP within the UK.

UK Childhood ITP Registry

The main aims of this project are to try and understand why some children with a low platelet count bleed, when there is a need for treatment and how having ITP impacts on the quality of life on the child and family.

The United Kingdom Thrombotic Thrombocytopenic Purpura Registry (TTP Registry)

The information from this study may help us to increase our understanding and improve future treatment for patients with TTP.

The molecular investigation of unexplained anaemias and related congenital anaemias

The study is for patients who have anaemia for which no cause has been found.

Einstein Junior study (Phase II)

The aim is see if rivaroxaban is as good at treating and preventing recurrence of blood clots in children as standard treatment (warfarin or heparin). The study will also see if rivaroxaban causes less or more bleeding than standard treatment.

Einstein Junior study (Phase III)

Options for the treatment of thrombosis (blood clots) in children are limited. Anticoagulant (blood-thinning) therapy can either be with a tablet called warfarin which needs monitoring with regular blood tests, or a daily injection of heparin. Rivaroxaban is an anticoagulant that can be given as a tablet or syrup and does not need monitoring.

ECHO: Expanding Communications on Haemophilia-A Outcomes

A prospective, international, longitudinal, observational disease registry of patient-reported outcomes (PROs), and clinical impact of Haemophilia A and its treatment in patients with moderate to severe Haemophilia A.


This study will observe feelings when discussing PK guided dosing with patients in the clinic & the process of discussing their own, personal PK profile after a brief educational session.

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