Cancer is the number one cause of disease-related death in children 1-14 years of age in Australia.
Cancer Council Queensland is working every day to improve outcomes for children with cancer.
Australian Childhood Cancer Registry (ACCR)
Entirely funded and managed since 2004 by Cancer Council Queensland
The ACCR is one of only a few national databanks for childhood cancer in the world. For the past three decades, the ACCR has been the only source of complete, population-wide information on childhood cancer in Australia for researchers, clinicians and affected families.
More than 700 children aged 0-14 are diagnosed with cancer in Australia each year. The ACCR provides a unique, high-quality database of diagnostic, clinical and treatment information on every case of childhood cancer diagnosed in Australia and uses the data to report national incidence, mortality, survival and trends over time. The Registry provides the foundation for epidemiologic, biomedical and clinical research into this rare but significant disease; it enables national dissemination of information about childhood cancer; and it facilitates national and international collaborative research to improve outcomes of childhood cancer in Australia.
Into the future, there are plans to expand the ACCR to include the addition of more detailed information on stage at diagnosis, treatment and patient outcomes. The overall content of the Registry will be reviewed to ensure that the information being collected is relevant and of the most benefit to patients, families, clinicians and other key stakeholders.
Here is a list of some of the current and planned projects happening in the ACCR:
Project 1 – Staging for childhood cancers
In 2015, the ACCR was asked to lead the development and testing of detailed protocols for the collection of information on cancer stage for all childhood cancer patients, based on newly released international guidelines. In this ground-breaking work, we have been able to show that, using our protocols, stage can be assigned for over 90% of childhood cancers included within the project scope. This information is vital for understanding treatment outcomes of childhood cancer. The next phase of the project involves development of a custom-made online application for collecting the data required to assign stage for childhood cancer patients. When testing is completed, the application will be made freely available to cancer registries worldwide. This study is of international importance as it has the potential to guide interventions aimed at earlier diagnosis and improved survival.
Project 2 – Online childhood cancer statistics
Using data from the ACCR, we have previously published the first comprehensive, national picture of cancer incidence, mortality and survival among Australian children. However, these reports are costly to produce and quickly become outdated. To address this need, work is underway to create an interactive, on-line website for publication of the latest available information to enable easy and rapid access to these data by families, clinicians and others involved in childhood cancer. This project will deliver a platform for increasing awareness of childhood cancer amongst government and the community. It will also provide accurate information on the burden of childhood cancer, not available from any other source, and will underpin advocacy for research to improve outcomes for children with cancer.
Project 3 – Research into specific childhood cancers
Data collected by the ACCR is also being used to answer a range of research questions for specific types of childhood cancer that are of national and international interest. For example, the characteristics of survivors of childhood cancer who then go on to develop “therapy-related” acute myeloid leukaemia are currently being investigated. This is a very uncommon disease about which little is known, particularly among children, and the prognosis is poor. It is believed to be primarily brought about by chemotherapy and/or radiation therapy received for the initial cancer. Data from the ACCR will help to give a clearer picture of therapy-related acute myeloid leukaemia in childhood, thereby moving closer to possible solutions.
The ACCR is also collaborating with specialists from around Australia to answer questions of clinical relevance about the epidemiology of childhood solid tumours, with an initial focus on renal cancers, neuroblastoma and rhabdomyosarcoma. These cancers are rare with little information currently available in the scientific literature. Our results will provide much-needed information on incidence, survival (in particular, the characteristics associated with better or worse survival), secondary malignancies and relapse.
Project 4 – Childhood cancer and Indigenous status
Previous studies from the ACCR found that, although Indigenous children were less likely to be diagnosed with cancer compared to non-Indigenous children, they had a higher risk of dying within 5 years of diagnosis. Preliminary evidence suggests that, unlike the Indigenous gap for adult cancer survival, the difference in childhood cancer survival between Indigenous and non-Indigenous children is narrowing. We will use the latest available data for a detailed examination of childhood cancer by Indigenous status to determine whether survival disparities have improved over time. If so, we will investigate reasons as to why the disparity has diminished, such as whether there have been changes in the treatment regimens received by Indigenous children with cancer, and how this knowledge can further improve outcomes for Indigenous children with cancer in the future.
Project 5 – Second malignancies following childhood cancer
Beyond the loss of young lives, the burden of childhood cancer extends to the longer term adverse health effects experienced by many childhood cancer survivors, either caused by the cancer itself or as a result of treatment. This includes an increased risk of developing a second cancer. In conjunction with the Australian Institute of Health and Welfare, we are about to commence work on a report detailing second malignancies following childhood cancer, with the aim of increasing understanding about the mechanisms involved.
Project 6 – Incidence projections for childhood cancer
Estimates of how many children are likely to be diagnosed with cancer in the future have never been produced. Using contemporary statistical techniques, we are aiming to provide the first ever incidence projections for childhood cancer in Australia. This data will be crucial for the planning of health services to meet demand over the next 20 years.
Project 7 – International comparisons of survival
International pooling and analysis of data with other childhood cancer registries is essential for epidemiologic research. We are collaborating with cancer registries in North America and Europe and North America to compare stage-specific cancer survival in Australia with that in other countries. There is evidence to suggest that survival for some childhood cancers (eg. acute myeloid leukaemia) is significantly better in Australia than in North America or many European countries, while survival for other types of childhood cancer (eg. liver cancer) appears to be somewhat lower in Australia. If we can unlock the reasons behind these differences, there is the very real potential to improve survival.
Other research into childhood cancer funded by Cancer Council Queensland
In addition to the ACCR, Cancer Council Queensland funds other research into childhood cancers through grants to researchers from other organisations. Current childhood cancer studies funded by grants from CCQ are outlined below:
CCQ Project Grant 1 – Queensland Cooperative Oncology Group, Lady Cilento Children’s Hospital
Many children diagnosed with cancer in Australia are enrolled in international collaborative clinical trials. These trials are a key method of testing new treatments and have led to large improvements in survival rates over the last few decades. Cancer Council Queensland has been providing funding to Queensland hospitals that treat childhood cancers since 2003. This funding has been used to support the conduct of cancer clinical trials conducted at the Mater Children’s Hospital (2004-2008), Royal Children’s Hospital (2003–2014) and Lady Cilento Children’s Hospital (2015 onwards).
In the past 15 years CCQ has provided research grants totally $1,985,347 specifically to support clinical trials in paediatric cancer patients. During this period there have been 800 Queensland children with cancer treated under a clinical trial protocol.
CCQ Project Grant 2 – Dr Michael Piper, The University of Queensland
Regulation of stem cell differentiation during cerebella development and medulloblastoma
Medulloblastoma (MB), a cerebellar tumour, is the most common childhood cancer of the brain. It arises from the unrestrained growth of neural stem cells, but our understanding of how MB forms is limited. Dr Piper’s group has identified a protein, Nfix, that is crucial for neural stem cell differentiation during development, and that is misregulated in MB. The research is aiming to understand how Nfix mediates cerebellar development, and to apply these findings to reveal the cause of this devastating cancer.
CCQ Project Grant 3 – Prof Brandon Wainwright, The University of Queensland
A synthetic lethal-based approach for the treatment of medulloblastoma
Brain tumours are the most common cause of cancer-related death in children and, of these, medulloblastoma is the most frequent. Recent genetic analyses have indicated that these tumours commonly have defects in regulation of the chromosomes (“chromatin”) such that the activity of hundreds, if not thousands, of genes are turned on and off with profound consequences for the patients. This project uses a completely novel approach to killing cells that have such an abnormality with their chromatin, potentially leading to improved treatment for this disease.