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What is the Australian Blood Cancer Registry? |
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Written by Administrator
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Thursday, 23 November 2006 |
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The Australian Blood Cancer Registry (ABCR) is a coalition of stakeholders including consumers, clinicians and researchers which is supported by pharmaceutical and healthcare organisations. The ABCR has as its aim to provide sufficient and appropriate information to achieve best practice in clinical care and policy development for blood cancers and associated conditions. This collection of detailed and accurate information on blood cancers will form a central database or disease registry. This information will be used to improve the capacity of clinicians, patients, their families, carers and the government to make informed and timely decisions on the management of blood cancers. Blood cancers are cancers that arise in cells formed in the bone marrow including leukaemia, lymphoma and myeloma.
Why is a Registry being developed for blood cancers?
Blood cancers are a significant public health issue because they constitute a major proportion of the years of premature life lost from cancer, and many of these diseases are potentially curable. Blood cancers constitute approximately 10% of all cancers diagnosed each year in Australia. In particular the world-wide incidence of Non-Hodgkin’s Lymphoma is rising by three per cent each year in developed countries. This includes Australia, which has a high incidence rate relative to many other countries.
While the basic details on who gets blood cancers are collected already, we do not have the more detailed information that is needed to improve treatment outcomes and management. Survival depends on delivery of prompt and customised treatment depending on the stage of disease and prognostic factors. An Australian Blood Cancer Registry will help provide this essential information for research and improved treatment outcomes. |
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Last Updated ( Wednesday, 08 July 2009 )
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Written by Cassandra Gauld
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Thursday, 23 November 2006 |
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The lack of national data detailing incidence, treatment patterns and outcomes for patients with these malignancies has been recognised for some time as an impediment to the delivery of optimal care. Most clinical haematologists believe that a more detailed national registry will improve the capacity to make informed and timely decisions on the diagnosis and management of patients with blood cancers, leading to better outcomes for patients, as well as enhanced government policy and resource allocation. After extensive consultation and the development of a model, a meeting entitled Working Towards an Australian Blood Cancer Registry was held in Sydney on 30 September 2005. Unanimous support for the development of the ABCR was received from 37 representatives of clinical, research, academic, consumer, support and government organisations, pathology laboratories, pharmaceutical representatives and software developers. Enthusiastic and recognised experts have been recruited to the Project Management and Clinical Reference Groups to guide the ABCR development. Meetings are held on a regular basis and a governance framework has been established. The Project Management Group is chaired by Dr David Joske, Head - Department of Haematology, Sir Charles Gairdner Hospital, Perth.
A number of the State Cancer Registries are represented on the Clinical Reference Group. Work on a number of initiatives is being progressed in close association with the State Cancer Registries to build on existing resources. |
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Last Updated ( Wednesday, 08 July 2009 )
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