Registry crucial to cancer research, advocates say

Data from the Cayman Islands Cancer Registry could be crucial to the prevention and management of the disease in the territory, according to health officials advocating for mandatory reporting of cancers and brain tumors.

Proposed new legislation would compel health professionals to report cancer diagnoses to the national registry.

Critics of the Cancer Registry Bill, including the Human Rights Commission, have raised concerns that it involves an unnecessary invasion of privacy and questioned how the data collected will advance the interests of public health.

Cancer Registrar Amanda Nicholson said the current process of voluntary reporting is not working, and more complete data is required.

She said the names of people diagnosed with cancer would be collected at the initial stage to avoid duplicate cases, but would not be entered into the registry.

Both the original paperwork, which she said would be kept in a locked filing cabinet, and the computerized registry would be available only to Ms. Nicholson.

She said she would be able to provide data derived from the registry to public health officials and researchers but insisted they would not be able to directly access the registry.

“The data we collect on the population of the Cayman Islands will be used to determine how many people are diagnosed with cancer here every year, what types of cancer are most common and what types of cancer are on the rise.

“We also hope to determine whether certain geographic areas of these islands have higher rates of cancer and, if so, whether there is an environmental cause.”

She said the current system of voluntary reporting could create a misleading data set. Breast cancer survivors are far more likely to report, for example, than men with prostate cancer, making it difficult to draw meaningful conclusions from the current registry.

Jennifer Weber, operations manager of the Cayman Islands Cancer Society, said data drawn from cancer registries is fueling public health policy and cancer management planning all over the world.

She said it could be used, for example, to determine whether mammograms, currently offered to women at age 40, based on U.K. guidelines, should be offered earlier in the Cayman Islands.

Accurate statistics on the types of cancer and the average age of diagnosis would also help with public information and education campaigns and how they should be targeted, she said

“We can’t begin to figure out the answers to these types of questions until we can get our arms around how much cancer we actually have.”

Ms. Nicholson said morbidity data from elsewhere in the Caribbean suggests the region has higher than normal cancer rates.

She said it is difficult to see whether that is reflected in Cayman or to investigate the causes without better statistics.

“Any research or study starts with cancer registries,” she said. “Numbers are the basis of any research.”

The data could be used to inform pan-Caribbean research to see if any genetic factors are contributing to high incidences of cancer, she added.

Researchers working in the Bahamas in 2012 found an abnormally high percentage of women had a gene that predisposes them to breast cancer. That study was commissioned after data from the cancer registry indicated Bahamian women were developing an aggressive breast cancer at much younger ages than their American counterparts.

“It is very dismissive to say it is not worth it. How do we know what we will find until we have the data?” said Dr. Sook Yin, medical director of the Cancer Society.

She said the bill is still in the consultation phase, and there are aspects that could be altered, including the requirement for people’s names to be reported along with the medical data. She acknowledged that this would create complications in terms of ensuring that instances of cancer were not reported more than once. But she said it could be done if it was deemed necessary to get the bill passed.

Dr. Vineetha Binoy, oncologist at Health City Cayman Islands, said she supports the cancer registry initiative.

“The availability of data will enhance the medical care we are able to provide collectively to our patients,” she said.

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