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PatientView:- Benchmarking patient groups: Part I of the report in which you participated.
Press release available here
. Patientview's homepage here.

The Association has carried out 3 surveys of its membership to date. Previous studies by clinicans or drug companies had quoted results from perhaps 10 - 30 ITP patients. Surveys of the ITP Support Association membership have returned results from hundreds of patients! This has given clinicians and drug companies a very clear picture of the issues that concern ITP patients, and parents of ITP children.

ITP and Fatigue Survey in Autumn 2009

ITP Lifestyle Survey in Autumn 2007.

Survey of Treatment for ITP in Spring 2000

An abstract of the manuscript analysing phase 1 of the ITP Support Association Fatigue Survey entitled Documentation of Fatigue In Patients with Immune Thrombocytopenic Purpura (ITP) and Its Association with Autonomic Dysfunction has been accepted for presentation in an Oral Session at the 2010 Annual Meeting of the American Society of Hematology in Orlando, Florida, on Monday 6th December at 4pm.

This data from 585 members of the ITP Support Association and 69 patients from the Oklahaoma ITP Registry was analysed by Professor Newton at Newcastle University (UK) and Professor James George, University of Oklahoma (USA). Investigating fatigue in ITP is an ongoing project and updates about this research are published in The Platelet, the Association's quarterly journal. As only 10-15% of the 6000 abstracts submitted to ASH are accepted for oral presentations this is excellent news in our drive to raise awareness about fatigue as a common symptom of ITP, so often unrecognised by health professionals. This is the biggest haematology meeting in the world – over 20,000 clinicians and researchers from all branches of haematology attend the ASH meeting each December.

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