The TORC 2013 Annual Seminar date has now been confirmed. This year's seminar will address the diagnosis and management (including transfusion support) of haemoglobinopathies. Program to be released soon.
When: 20 September 2013
Where: AMREP Lecture Theatre, The Alfred Hospital, 55 Commercial Road, Melbourne VIC
Wednesday 8th May was International Thalassaemia Day. The day is a celebration for all people living with thalassaemia, as well as a chance to remember thalassaemia patients who have passed away.
The focus of this year's day was thalassaemia intermedia, a condition where β-globin chain production is reduced, but not completely absent, as it is in β-thalassaemia major. Despite its name, β-thalassaemia intermedia can have a clinical picture just as severe as that of β-thalassaemia major, and patients are dependent on blood transfusions every 3-4 weeks, for their entire lives.
Thalassaemia Australia, the Melbourne-based support group for patients with haemoglobinopathies, have been very busy this week, visiting blood donation centres around the city and thanking donors and blood service staff for the donations that keep thalassaemia patients alive.
The Transfusion Outcomes Research Collaborative recognises the importance of haemoglobinopathies, including thalassaemia, in our community. Our clinical registry for haemoglobinopathies is in development and we are very pleased that this project has the support of Thalassaemia Australia. We look forward to launching the Haemoglobinopathy Registry later this year. The data we will gather will answer some important questions for the medical community, and will guide future management of patients with thalassaemia and sickle cell disease, as well as assist with the planning of health care services.
The TORC Annual Seminar was held on Friday 14th September 2012 at the Melbourne Conference and Exhibition Centre. Thank you to all who attended for their time and excellent presentations, and to the TORC Steering Committee, in particular the Chair, Dr Merrole Cole-Sinclair, who opened and closed the Seminar.
The Seminar presentations are available here.
We are pleased to announce that the TORC endorsed study “STandaRd issue trANsfusion versuS Fresher red blood cell Use in intenSive carE (TRANSFUSE)-a randomised controlled trial” was funded by the NHMRC for $2,761,879 over four years. The TRANSFUSE randomised control trial (RCT) is a multi-centre 5,000 patient trial of fresher red blood cells (RBC) versus standard issue RBC in intensive care patients. Patients will be recruited beginning mid-2012 in ICUs in Australia and New Zealand (NZ). The TRANSFUSE-RCT is a collaboration between the Blood Service, TORC, and the ANZICS-Clinical trials group. This large RCT will answer this critical question which will have important health policy/transfusion practice implications in Australia and internationally.
We are also very pleased to announce that the TORC endorsed INFORM study has been successfully funded by the Canadian Institutes for Health Research for C$1,606,292 over four years.