Work of the Transfusion Outcomes Research Collaborative

Informing transfusion decisions

There is only limited information about the way blood products are used in different clinical areas in Australia.  There is evidence of substantial variation in transfusion practice, but little understanding of how this variation affects patient outcomes or how best to use blood components in various clinical settings.  Data regarding the appropriateness of blood use with respect to established clinical guidelines are also limited.

The partnership's activities address these deficits through existing and new data sources and data linkages.  The partnership gathers data sources that were not previously held centrally and analyse it for trends in patient outcomes following transfusion.  These data complement existing haemovigilance activities.  It also provides insights that can be used as the basis for improving clinical practice guidelines, or for inspiring additional research, including cost-effectiveness analysis and clinical trials.

Defining guidelines for data collection

Currently there is no nationally consistent approach to the collection of research data regarding transfusion.  Different studies have used different reference points and parameters for data collection, potentially hindering comparisons between related studies.  TORC will work in new partnership with a national initiative to define new standards for the management of blood related data, informing the selection of appropriate measures and criteria for transfusion in Australia.

Establishing new registries

The partnership will work with the Blood Service Transfusion Medicine specialists and other interested clinicians to build separate, new national registries for rare diseases. 

Each of these diseases, while uncommon, is associated with a substantial burden of morbidity and mortality in our community and the treatment of each depends on the transfusion of highly specialised blood components.  Their relative rarity hinders information accrual and the establishment of clinical trials and other studies.  For each of these diseases, registry data will provide important information about current management and outcomes and inform patient care and future clinical trials.