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 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.