We thought the old site was looking slightly tired and needed an overhaul so here’s the new model. There are more pages, photos, an FAQ page (empty but will be filled, especially if you send in questions), maps and other information. We hope you like the new look and feel of the site. If there’s anything you want added please email us and we’ll try to add them.
The site is designed 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 1.6 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.
For Registry or drug trial information please contact us.