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UK Adult Idiopathic Thrombocytopenic Purpura (ITP) Registry

Contact phone number: Dr Tina Biss 0191 2824743

Why is this study important? 

ITP is an uncommon disease characterised by a low platelet count, due to removal of platelets by the immune system. It can cause bleeding, either spontaneously or due to surgery or trauma. There are many treatments available for this condition but little is known about when treatment is needed and which treatment may be best for an individual.

What is the aim of this study? 

This is a registry study that is aiming to recruit hundreds of individuals with ITP within the UK. The study will try to answer some of the questions about why ITP occurs, what happens to people with ITP and how it responds to treatment.

What do people in this study have to do? 

If you have ITP you can be recruited to the study when you attend your routine appointment in the haematology clinic. The research team will look through your medical records to take details about your ITP. A single blood test will be taken for genetic testing. Although further information will be collected every year, you will only need to attend for the study on one occasion.

What are the risks and benefits for participants? 

There is no additional risk to taking part. The blood sample will be collected at the same time as a routine sample. Genetic tests will only be relevant to your ITP.

Useful links:

Details about the study can be found on this website: www.itpregistry.com

Recruitment to this study is due to end:

May 2017

A summary of the study findings should be available by: 

Results of the study will be published after the end of the study. Regular updates on study progress can be found on this website: www.itpregistry.com

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.

UK-PK

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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