(This may be of interest to members.)
The Thrombotic Microangiopathies Registry has forwarded the following communication:
“The Thrombotic Microangiopathies Registry presents their May 2019 Newsletter.
The Thrombotic Thrombocytopenic Purpura (TTP) Registry/ Thrombotic Microangiopathy (TMA) Registry was established in 2009 under the auspices of the Transfusion Outcome Research Collaborative (TORC) collaboration between Monash University’s Department of Epidemiology and Preventive Medicine, and the Australian Red Cross Blood Service, and hospitals across Australia.
A large number of centres have obtained ethics approvals with over 300 patients enrolled so far. Registration is ongoing, so please contact us if your site is not participating, and you want to be involved.
Opportunities that are running in conjunction with the Registry:
Thrombotic Microangiopathies Symposium, 5 July 2019
As part of the ISTH Congress, the Registry is holding a free TMA Symposium titled “Making Sense of Thrombotic Microangiopathies”. The day will feature talks from local and international speakers, as well as some interesting case presentations.
For more information and to register, please click here.
2019 TMA Survey
As part of this project, the TTP Registry is conducting a survey of centres managing patients with TTP and other TMAs. This survey updates a similar survey performed in 2015. The current survey seeks to determine how widely specialised testing (ADAMTS13 levels, anti-ADAMTS13 antibodies, genetic testing etc) is being performed, the range of therapies used in the management of TTP/TMAs and if/how this has changed over the last 4 years.
This survey should take only 15 to 20 minutes and an information sheet is attached.
You can access the survey by clicking here.
We hope to see you all at the TMA Symposium and look forward to receiving your survey responses.”