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UK Childhood ITP Registry

Location: North East and North Cumbria

Contact phone number: Dr Tina Biss 0191 2824743

Contact email: Tina.Biss@nuth.nhs.uk

Why is this study important? 

ITP causes low platelet count in the blood, due to removal of platelets by the immune system. It can cause bleeding. There are many things about ITP that we do not fully understand e.g. why people suddenly get ITP and why some young people get better more quickly than others.

What is the aim of this study? 

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.

What do people in this study have to do? 

The study is for children under 16 years with ITP. We would gather information about your ITP from your medical notes and ask you to do some 10 minute online questionnaires at certain points until your ITP improves.

What are the risks and benefits for participants? 

There is no additional risk to taking part. The study may improve the way we treat ITP in the future

For further information about this study please follow link

Dr Tina Biss 0191 2824743

http://www.uk-itp.org/patientInfo.htm

Recruitment to this study is due to end:

Apr 2026

A summary of the study findings should be available by:

Analysis will be carried every six to twelve months. The results will be published in medical journals and possibly used to modify future treatment.  Information from the database will be fed back to families via the ITP support association. You will not be identified in any report or publication.

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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