Welcome to the UK ITP Registry and autoimmune hematology website

We have designed this website to assist haematologists who want to take part in three UK Registries (Adult ITP, Familial ITP and Evans' Syndrome), as well as providing additional information which will be of interest to patients with ITP.

Aims: to collect clinical information (age at onset, bleeding symptoms, treatments given and responses), standard lab tests, and investigational assays. All this information will be analyzed looking for associations between the presence of genetic variations and (i) development of ITP, (ii) responses to treatment, (iii) severity of ITP and several other parameters. We are keen to involve as many UK centres as possible.

Revised Adult ITP Registry: We encourage all potential collaborating centres that have not already done so to file for local R&D approval for the Revised Adult ITP Registry. Instructions for doing so may be found in the UKITP Readme 1.5 document on the Adult Registry page of our study website.

Importantly, the revised registry is site specific assessment (SSA)-exempt, which should make filing relatively painless. The launch date for the Revised Adult ITP Registry is currently slated for mid-May. We are currently final finalising the specifications for our online database with Dendrite Systems Ltd. and will be in touch with all past and present collaborators via email as soon as our new system is up and running.

For Registry or drug trial information please contact us.

ITP users' forum
We have recently added an ITP users’ forum where patients, families, and health professionals can feel free to post their experiences and to ask questions. If well run, such forums can be informative and entertaining. Please do feel free to make it your own. You can log in to the forum → here.

 

New award from the Hopkin Family
We are indebted to Paul Hopkin and his family for their very generous donation of almost £5000 which will be used for our molecular research into the causes of ITP. Paul's son, David, had ITP and sadly passed away last year. In addition to the money raised for The Royal London, the family has been incredibly busy fundraising, with Dave's brother Mike recently taking part in a sponsored cycle ride which has raised a significant amount of money. So a big thank you from all of us here at The London and watch this space for results of our ITP research!

Podcasts have been moved
We have compiled a series of podcasts (digital audio recordings) regarding ITP-specific information on treatment modalities and immunology which we hope will be of interest to patients and their families. These recording can be easily downloaded to a computer or mp3 player via the following link. An index of these podcasts can also be found on our UK Adult ITP Registry Forum. Click here.

Trials about to start...
At present, we have no ongoing clinical trials for ITP at The London. In addition to our extensive work with the Registry, however, we are currently pursuing a further observational study on resource utilisation among chronic ITP patients in tandem with Amgen and helping to analyse the results of the 2007 ITP Support Association Patient Survey. Deborah Kenny, our ITP nurse specialist, reports on the past year in the clinic. Click here.

New Molecular Scientist Appointed
We are delighted to report the appointment of Dr. Momin Ahmed as our new post-doctoral molecular scientist. As a specialist registrar in haematology and former researcher at the Weatherall Institute of Molecular Medicine at the University of Oxford, Momin joins our team with a wealth of clinical, laboratory, and epidemiological experience. He will utilise single-nucleotide polymorphism (SNP)-association testing and gene expression to analysis to reveal more information regarding ITP aetiology and disease progression.

 

 

 

 

© 2004 | Modified: Thursday, July 24, 2008
Thursday, July 24, 2008