Mr. Speaker, the creation of uniform national standards and guidelines for the surveillance of all malignant and benign brain tumours has the potential to improve the quality and completeness of brain tumour registration across Canada. Complete and accurate data on preliminary brain tumours would facilitate research into the causes of this disease, which may lead to improved diagnosis and treatment of patients.
Currently published statistics usually include malignant tumours. Benign tumours are slower growing and do not invade important structures, while malignant tumours are fast growing and may invade and damage important structures. Nevertheless, for improved cancer surveillance, it is worthwhile for cancer registries to collect and report standardized information on benign brain tumours since they result in similar systems and outcomes as malignant tumours. Ideally, data collected by cancer registries should include all tumours of the central nervous system.
Cancer registries have been created in each of the provinces and territories, but the sources of data and relevant legislation varies. In addition to provincial, territorial registries, there is a central Canadian cancer registry maintained at Statistics Canada, which includes selected data from each of the provincial and territorial registries.
Cancer registries serve several purposes by linking available sources of administrative data to obtain information on the number of new cases and corresponding patient follow-up information. This information allows basic surveillance and establishes a platform to provide the additional information needed to develop an evaluate cancer control programs.
Current uses for cancer registries include linkages to other administrative databases such as vital statistics and further assesses potential causes of cancer such as behavioural risk factors as well as occupational and environmental exposures.
A total of 2,500 cases and 1,650 deaths in Canada from malignant brain and nervous system cancers were expected in 2006 The number of brain and nervous system cases registered would be increased by around 40% to 70% if benign cases were included. Based on underlying causes reported on death certificates, the number of deaths would be increased by about 30% when benign and uncertain brain tumours were included.
Benign cases contribute a substantial proportion of the total burden of brain cancer. The inclusion of benign brain tumours in standard data collection and the adoption of standard site and historical definitions for tabulating benign brain tumours is needed to incorporate these tumours fully into the Canadian cancer registry and allow comparability of information across registries and internationally.
Including non-malignant brain tumours in the Canadian cancer registry is also needed to allow these tumours to be studied fully, including an evaluation of the trends in the rates of newly diagnosed cases for this type of cancer.
It will be necessary to report and analyze data for non-malignant central nervous system tumours separately from malignant tumours. By including data on these two tumour types in the registries, it will be available for use in analytic epidemiological research studies that will help identify factors that influence the risk for developing malignant and non-malignant tumours.
Another reason why it is important to include benign brain tumours in registration is that there is a large number of sub-types of brain and nervous system cancers. The chance of recovering or prognosis and the choice of treatment depend on the type, grade and location of the tumour and whether the cancer cells remain after surgery and/or have spread to other parts of the brain. For example, survival rates are generally higher for benign meningiomas than for malignant meningiomas, but the treatment of benign tumours may be limited by their location. Favourably situated lesions are usually amenable to complete removal by surgery, while other types are more difficult to fully and safely excise.
Reporting of benign brain cancer is expected to increase the total overall number of reported cancer cases by about 1%. There would be some implications for the registry to this added reporting, including some modest costs, the need for training and database upgrades and possibly revisions in legislation.
Registries may also need access to additional sources of administrative data to ensure that cases not included in the current source are captured. For example, where cases are not hospitalized shortly after diagnosis, access to other data sources, such as pathology records or physician claims data, becomes more important.
Completeness of reporting is critical for cancer registries. Accurate case counts are necessary to assess the burden of cancer, to guide cancer control program planning, to prioritize the allocation of health resources and to facilitate epidemiologic research. This is a particular challenge for registries with access to limited sources of administrative data.
Cancer registry information is continually being enhanced with data relevant to these programs. For example, stage data, the extent of the disease at the time of diagnosis, was not collected when cancer registration was initiated.
However, currently there are collaborative initiatives among the cancer registries, Statistics Canada and the Public Health Agency of Canada to collect cancer stage data at the time of diagnosis. Stage information is necessary to better describe and evaluate cancer survival and cancer control programs. Other data enhancements are being considered to fill the information gap between diagnosis and death.
In addition to adding cancer stage data to the cancer registries, current priorities for enhanced cancer surveillance under exploration with provinces, territories and cancer stakeholders are the collection of radiation and other treatment data, treatment access, treatment outcome, improved record linkages and consideration of privacy legislation.
These ongoing enhancements of the cancer registries will also benefit the study of both benign and malignant brain tumours.
Knowing more about the risks for brain cancer and its evaluation and impact across a lifetime is particularly important because brain cancer is a significant cancer among young adults. In 2003, 388 cases were diagnosed within the 20 to 44 age group, or close to 20% of brain cancer cases among Canadians aged 20 and older. I can attest to those age groups because my brother died of an astrocytoma, which is a malignant brain cancer.
The Brain Tumour Foundation of Canada has developed a patient resource handbook, directed to patients, family members, caregivers and other individuals who have been affected by brain tumours.
It is clear that for Canadian cancer registries to provide the most complete information for brain tumours, data on both benign and malignant tumours needs to be collected. I ask members to join with me in commending the member for introducing the motion and giving it the support of the House.