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The UK Adult ITP Registry

The Towler family funded a pilot year of the ITP Registry in memory of Carol Towler. The ITP Support Association pledged funding to continue the Registry which is being compiled under the auspices of Dr. Drew Provan at the Royal London Hospital.

As many members of the ITP Support Association have suffered chronic ITP for many years (50 years in one case!) the Association felt that it was important that they too should be involved in such a study, and pressed for the UK Registry (unlike others in Europe) to be retrospective and all inclusive.

Dr. Provan explained: "In 2003 we obtained approval from the London Multicentre Research Ethics Committee (MREC) to set up a registry for adult patients with ITR So what? you may ask. Let me explain the purpose of the registry.

Disorders such as ITP are uncommon, and each clinician will see relatively few affected patients, making the study of these disorders difficult. For common conditions such as heart disease, the study of large numbers of patients worldwide has significantly improved the quality of care, and we now know how to treat patients with these disorders. The reverse is true for uncommon disorders such as ITR There have been few good.studies involving large numbers of patients and we are still struggling to decide who needs treatment, which treatment is best, how long to treat, when to stop, and so on. The UK Adult ITP Registry will allow us to collect a large amount of information about ITP patients (anonymously-patients will never be named or identifiable in any publication of results) and by analysing this information we will learn a great deal about ITP and its treatment.

Molecular studies?
There are at least 60 autoimmune diseases, of which ITP is one. Some of these diseases have been studied scientifically, using DNA from patients with these diseases. Scientists have examined the genes controlling the immune system and have come up with some interesting findings. Readers of The Platelet will know that we are currently carrying out small-scale studies of this kind in London. However, we have access to relatively small numbers of ITP patients. We can greatly increase this number by asking patients with ITP if they would be willing to take part in The Registry. If he or she agrees, a small blood sample will be collected and sent to The Royal London, where we will analyse the immune response genes to determine whether gene variations (minor changes in genetic code) can influence the outcome of the disease, or can predict the response to a treatment such as intravenous immunoglobulin or splenectomy. In the future, we may be able to use these as predictors of response, and inform patients which treatments are likely to work.

What will happen to the results of the study?
We will report our findings in the major haematology journals. In addition, we will keep you informed of progress by providing updates in The Platelet -and the annual ITP Support Association convention.

What happens next?
Because we have received the MREC approval, it is a simple matter for haernatologists in other hospitals to submit a local ethics form which I will send to them, along with a few other documents such as the local researcher's CV. This will satisfy the Local Ethics Committee and the haematologist can register patients after obtaining the patient's consent.

If you live in the United Kingdom and would like to take part in the study please download and print out the document available here and show it to your own haematologist."

Ameet Sarpatwari

In February 2007 Mr Ameet Sarpatwari (newly appointed study co-ordinator) reported on behalf of The Royal London Hospital: As many of you recall, we initiated an adult ITP registry for the United Kingdom nearly six years ago. Through the assemblage of a large number of patients, we hoped to uncover valuable information concerning the natural progression and overall burden of adult ITP, the effectiveness of commonly utilised treatments, and promising genetic markers of disease severity and chronicity.

The response to this study among both patients and consultant haematologists was truly overwhelming. From inception of the registry in 2001 until the conclusion of 2004, we were able to consent and enroll 609 patients, making this study one of the largest in the world. Sadly at that time, we found ourselves ill-equipped to process this wealth of information and were forced to place the study on temporary hold.

Today, we are delighted to inform you of its imminent return! Through generous support from both The ITP Support Association and GlaxoSmithKline (GSK), we have been able to secure the resources necessary to see this project through to its completion, including the full-time efforts of one PhD student from the University of Cambridge. Following receipt of ethical approval for re-initiation of the study this spring, we will commence collection of updated past participant information while enrolling new patients at The Royal London Hospital and a representative selection of haematology centres across the United Kingdom. Progress reports for this study will be published in a bimonthly newsletter available at our online study site (www.ukitpregistry.com).

We are extremely excited at the prospect of this study yielding findings aiding in the effective treatment and prevention of this still poorly understood condition. These findings will be disseminated in peer-review journals such as The British Journal of Haematology and Blood, in patient-publications including The ITP Support Association's The Platelet, and via our online study site. If you would like to find out more regarding this study, please do not hesitate to contact the study coordinator, Mr. Ameet Sarpatwari (avs31@medschl.cam.ac.uk).

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