Toward an Australian Blood Cancer Registry - A National Initiative
Dr Kirsten Herbert
Blood cancers such as lymphoma, leukaemia and myeloma are a significant health concern in Australia. They account for more than 10% of all cancers nationally. Non-Hodgkin lymphoma is the fifth most common cancer overall and has had an unexplained increase in incidence of 40% in the last 10 years.
State cancer registries have collected broad incidence and mortality data but the lack of a central repository to consolidate population wide information on staging, treatment patterns and outcomes in order to optimise clinical decision-making has long been a significant gap in the management of blood cancers in Australia.
To address this unmet need, the idea of developing a more detailed national registry for blood cancers was conceived – the Australian Blood Cancer Registry. The goal is to have complete, accurate data on the management trends and outcomes of Australians with blood cancers and related disorders.
A group of clinical haematologists and representatives from consumer organisations formed a project management group and following a research and consultation phase, the first stakeholder meeting, Working Towards An Australian Blood Cancer Registry, was held in Sydney in September 2005.
In 2006/7, the ABCR received a grant from the Australian Government through the Information Technology On line (ITOL) Program of the Department of Communications, Information Technology and the Arts to develop the Lymphoma Wizard. Lymphoma Wizard has been developed to provide a clinical desktop application to support specialists’ diagnosis and management of blood cancers. It facilitates electronic communication between medical specialists, pathology services, patients and the ABCR and will allow medical specialists to quickly and effectively collect detailed data about diagnosis, staging, treatment and treatment outcomes for each of their patients.
In November 2006, the ABCR’s second annual stakeholder meeting was held in Sydney attended by 60 delegates. There was unanimous support for the registry’s work to date and a strong commitment from stakeholders to continue supporting future initiatives.
Projects underway in 2007 include the collection of new lymphoma cases in WA as a joint project between the ABCR and the WA Haematology Collaborative Network; moves to develop a CML Registry in Australia in association with planned clinical trials and pharma; and the implementation of the Lymphoma Wizard in a number of States.
Once established the ABCR will collect detailed and accurate information on blood cancers. This information will be used to improve the capacity of clinicians, patients, their families, carers and governments to make informed and timely decisions on the management of blood cancers.
The ABCR will provide clinical haematologists and oncologists with the necessary information to improve survival and treatment outcomes and set standards to achieve best practise in clinical care. It is hoped that the ABCR will provide a best practice model which can be adopted in the development of other cancer registries in Australia.
The Leukaemia Foundation has provided the Secretariat for the ABCR since January 2007.
Find out more about the ABCR at www.abcr.net.au