by Gillian Slade, medicinehatnews.com, 4 August 2015
There were 2,900 newly diagnosed cases of brain cancer in 2014 based on the Canadian Cancer Statistics Reports between 2010-2014.
The cancer surveillance system does not capture all primary brain tumours.
“I would approximate that the actual number of new cases is about double that reported here,” said Faith Davis, professor and vice-dean school of public health, University of Alberta who will be helping to create a brain tumour registry.
It would help to identify whether there is an increase of brain tumours in some parts of the country, whether mortality is increasing or not, and whether survival outcomes are similar in different regions, said Davis. It would also tell how well we are doing in diagnosing and treating the disease.
“I’ve been involved with brain tumour surveillance probably since about 1990. I was involved with the feasibility studies and the work that resulted in the development of the centre brain tumour registry in the United States,” said Davis.
The brain tumour foundation of Canada, recognizing some gaps in the system, asked Davis to look at the feasibility of creating a brain tumour surveillance system in Canada.
While clinicians see and treat all primary brain tumours the standard cancer surveillance reporting system only records brain tumours that are malignant, which is only about 50 per cent of brain tumours, said Davis.
Currently clinicians can’t get information on the full patient population so they don’t know the health outcomes of the full patient population. They can’t study the full spectrum of the disease because they don’t have information on it.
“As a population scientist, population researcher, I can’t with confidence look at the patterns of some tumours because those tumours may have malignant and non-malignant tumours in that same category,” said Davis. “It restricts our ability to understand what causes the tumour and understand how well we are doing providing services to these patients.”
Davis is awaiting a decision on funding to compile a registry of non-malignant brain tumours in Alberta. She is working with the Canadian Cancer Registry system. Each province has its own system funded under provincial healthcare.
Tweaking of this electronic system will be needed for it to accept data on non-malignant brain tumours. Staff will be trained about tumours to review and code information accurately so data can be extracted.
It will take about 18 months to get the data in the systems. At that stage Davis hopes to be able to publish the first “almost pan-Canadian report on primary brain tumours”.
“We’re hoping three years,” said Davis.
This will include data from Ontario, Quebec, B.C. Alberta and Manitoba, representing 90 percent of the brain cancers reported in Canada.