TORC hosted a successful annual investigators’ meeting on Friday 17 June. The morning session was devoted to the Massive Transfusion Registry, whilst the afternoon session focused on the TORC projects.
Copies of presentations from the day are available here.
Our 100th patient was enrolled in February 2016 - a huge milestone for this rare but important condition. Mothers and babies may receive intravenous immunoglobulin to try to prevent or treat this condition where maternal antibodies cross the placenta and cause low platelets (and potential for serious bleeding) in the foetus or neonate. Specially matched intrauterine or postnatal platelet transfusions may also be required.
The Aplastic Anaemia Registry has developed and released its first annual report for 2015. This report describes some of the preliminary information the registry has been able to collect and the activates of the registry over the last couple of years. The report can be found here.
(1Haematology Society of Australia and New Zealand, the Australian & New Zealand Society of Blood Transfusion, and the Australasian Society of Thrombosis and Haemostasis)
Shlomo Cohney (TTP/TMA Registry Steering Committee Chair) and Piers Blombery (TTP/TMA Registry Steering Committee Member) both presented well received invited presentations at HAA in October 2015. Shlomo’s talk, entitled “Is the TTP/TMA National Registry providing useful data?” provided a summary of the TTP/TMA Registry to date and the avenues of research stemming from the registry data now available for further scrutiny. Piers discussed the difficulties surrounding the diagnosis of both TTP and other TMA’s and the developing knowledge around more targeted treatments for patients in his talk entitled “TTP/HUS – a continuing puzzle”. Please click here to see summary slides of these presentations.
The Aplastic Anaemia Registry (AAR) is pleased to announce it has become the first recipient of a research grant from the newly formed Maddie Riewoldt's Vision (MRV). MRV was established by the Riewoldt family in honour of Maddie, to both raise the public’s awareness of aplastic anaemia and other bone marrow failure syndromes, and to also raise some much-needed funds to support research into these rare but important disorders.
The AAR will receive an initial grant of $80,000, with the possibility of further funding in the future. Associate Professor Erica Wood, Consultant Haematologist and Head of the Transfusion Research Unit, said the Maddie Riewoldt’s Vision (MRV) grant will contribute significantly to the valuable work of the AAR.
If you would like more information about Maddie and the foundation in her name, please visit the foundation website: http://mrv.org.au/.
The TORC 7th Annual Seminar was held on Friday 11th September. Presentations and video recordings of the day are available here.
Thank you for a successful inaugural National TTP Forum!
The inaugural National TTP (thrombotic thrombocytopenic purpura) Forum was held in Melbourne on 15 August 2015, hosted by the national TTP Registry.
Presentations and discussion covered all aspects of diagnosis and management of TTP and other thrombotic microangiopathies, including updates on national registry data.
Participants came around Australia and even New York! Thank you for your contributions.
We really hope everyone enjoyed the TTP Forum and have provided the presentations below.
TTP Management: What is the evidence? Chris Ward
The pathogenesis of TTP and tests associated with its diagnosis. Kent Chapman
Status report of the TTP/TMA Registry. Leah Kivivali
New therapies for TTP. Jake Shortt
Apheresis in TTP management: Evidence & practicalities. Claire Dowsing
Transfusion controversies in thrombotic thrombocytopenic purpura. Philip Crispin
Diagnosis and managements of TMAs in pregnancy. Bhadran Bose
TMA and the aHUS kidney update. Nikky Isbel
Optimising outcomes in rare diseases: Models of care and resource utilisation. Jeff Szer
Use of eculizumab in a paediatric allo-transplant recipient with TMA. Rachel Conyers
Two challenging TTP cases at the Austin. Lucy Fox