Thursday, 4 August 2016

New lymphoma registry to provide vital cancer data

The Australian and New Zealand Lymphoma and Related Diseases Registry (LaRDR) is one of nine registries run by the Transfusion Research Unit (TRU). These projects focus on the treatment of important blood disorders and conditions requiring major transfusion support.

The LaRDR, managed by Research Fellow Dr Jessica Morison, has recently gained ethics approval to pilot data collection at six sites across Victoria, NSW, Canberra and Queensland. The LaRDR has also established a partnership with the Melbourne Genomics Health Alliance and will collect data for the Lymphoma Flagship of the project.

According to Cancer Council Australia, lymphomas are the most common form of haematological or blood cancer in Australia. Lymphoma is the sixth most common cancer in terms of prevalence for all cancers and the primary reason for cancer hospitalisation in Australia.

The incidence of lymphoma has more than doubled over the past 20 years and is continuing to rise, for no known reason. Nevertheless, lymphoma are placed among cancers with largest absolute increase in survival, attributed to a large number of therapies under development.

“Although lymphoma represents a significant disease burden to the community and the health budget, there’s very little national data readily available on patterns of treatment or variations in outcomes, for both survival and quality of life – and this is where the LaRDR could make a huge difference,” said Dr Morison.

“The LaRDR will provide important Australian and New Zealand epidemiological, clinical and outcomes data and will support the translation of research findings into clinical practice,” said Head of the TRU Associate Professor Erica Wood.

The LaRDR has been established to address questions about lymphoma epidemiology variation in practice, process and outcome measures; access to care; and uptake of new therapies.

The LaRDR Steering Committee brings together a multidisciplinary team of specialists and experts in lymphoma diagnosis, management and research and is chaired by Associate Professor Stephen Opat, head of Clinical Haematology at Monash Health and President of the Haematology Society of Australia and New Zealand.

Members of the Registry Steering Committee include: Professors John Seymour, Maher Gandhi and Mark Hertzberg; Associate Professors Stephen Opat, Dipti Talaulikar, Erica Wood and Judith Trotman; and Drs Anna Johnston, Colm Keane, David Joske, Jake Shortt, Leanne Berkahn, Michael Dickinson, Pratyush Giri and Zoe McQuilten.

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