Cancer registries help us monitor cancer rates, risk factors and treatment strategies across the country. These registries tell us valuable information about rare cancers like mesothelioma so that we can develop advanced prevention and treatment approaches.

Cancer patient registries help us advance our understanding of all kinds of cancers, including rare cancers like mesothelioma. The goal of cancer registries is to reduce the burden of cancer through prevention and improved patient care. While a national mesothelioma registry does not yet exist, the mesothelioma community has been advocating for a patient registry since 2015.

Fortunately, the Center for Disease Control and Prevention (CDC) is laying the groundwork for a mesothelioma cancer registry. The CDC is currently funding a 2019 study to determine whether a mesothelioma registry would be worthwhile.

About 1 in 5 cancers diagnosed in the U.S. is a form of rare cancer, such as mesothelioma.

Rare cancers are significantly more challenging to diagnose, control and treat since we don’t know much about them. A mesothelioma cancer registry would help us develop advanced prevention strategies, methods of early detection and better treatment interventions for patients.

What Are Cancer Registries?

A cancer registry is an information system that collects detailed information on cancer patients.

Cancer data is collected at healthcare facilities and compiled in state registries. From here, the information is sent to national registries. Registries on specific cancer types are used to guide research, education, treatment, patient care and public health initiatives such as screening programs.

Each state has a comprehensive cancer control coalition which uses cancer registry data to fix public health problems. The updated cancer registry lets them know if their solution worked.

What Information Can Cancer Registries Tell Us?

Cancer patient registries contain a range of cancer-related patient information, including:

  • Medical history
  • Diagnosis details
  • Treatments used
  • Cancer recurrence
  • Healthcare coverage and usage
  • Participation in clinical trials

Registries highlight things that can be done to reduce cancer among high-risk groups of people. For example, the data may reveal that certain groups of people aren’t getting regular cancer screenings. Registries also uncover lifestyles or workplaces that put people at higher risk for developing certain cancers.

These registries can answer important questions, such as:

  • Which groups of people are most likely to get pancreatic cancer?
  • Are there regions where people receive a cancer diagnosis at a later stage?
  • Have the rates of breast cancer decreased since last year?
  • Are obesity-related cancers on the rise in certain states?

Registries tell people information about their cancer risk, so they can take preventive action and get screened more frequently. Doctors use these registries to learn the best ways to diagnose and treat various cancers.

Registering data can be particularly useful for revealing environmental and occupational factors that put people at higher risk of rare cancers. For example, registries tell us that people who have worked certain jobs have a higher risk of developing mesothelioma.

Examples of Cancer and Mesothelioma Registries

Several registries have helped scientists form a better understanding of rare cancer causes. This is crucial for preventing future cancer cases and treating existing ones.

For example, mesothelioma registries show that men are more likely to develop mesothelioma than women. It’s also apparent that specific regions in the U.S. have higher mesothelioma rates than others.

North Dakota Statewide Cancer Registry

The North Dakota Statewide Cancer Registry was used to determine whether roads paved with erionite gravel, a mineral similar to asbestos, may be dangerous to people living nearby. The registry mapped out the mesothelioma cases in different counties. However, the map revealed that no mesothelioma victims lived in counties where this gravel was used.

Cancer Registry in Minnesota

In Minnesota, a statewide cancer registry showed increased rates of mesothelioma among northeastern Minnesotans. This finding launched an investigation into the occupational diseases faced by people in the region.

Firefighter Cancer Registry

Some cancers are more common among people who work specific occupations, such as firefighting. Because of this, the National Institute for Occupational Safety and Health launched a nationwide Firefighter Cancer Registry. The goal with this is to increase understanding of related diseases, including mesothelioma.

Seeking Justice for Mesothelioma

Cancer registries play an essential role in helping scientists understand the causes of rare cancers such as mesothelioma. The data reveals links between certain occupations and mesothelioma through exposure to asbestos on the worksite.

If you’ve received a mesothelioma diagnosis after working with asbestos-containing products, contact Mesothelioma Hope today for help with your case.

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Laura WrightWritten by:

Lead Editor

Laura Wright is a journalist and content strategist with more than 16 years of professional experience. She attended college at the University of Florida, graduating magna cum laude with a bachelor’s degree in journalism in 2008. Her writing has been featured in The Gainesville Sun and other regional publications throughout Florida.

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References
  1. “National Mesothelioma Patient Registry funded through CDC” International Association of Heat and Frost Insulators and Allied Workers. Retrieved from https://www.insulators.org/government-affairs/national-mesothelioma-patient-registry-funded-through-cdc. Accessed on April 4, 2019.

  2. “How Cancer Registries Work” Centers for Disease Control and Prevention. Retrieved from https://www.cdc.gov/cancer/npcr/value/registries.htm. Accessed on April 4, 2019.

  3. “Rare Cancers Present Unique Challenges” American Cancer Society. Retrieved from https://www.cancer.org/latest-news/rare-cancers-present-unique-challenges.html. Accessed on April 4, 2019.

  4. “Cancer Registries: Investigating Possible Cancer Causes” Centers for Disease Control and Prevention. Retrieved from https://www.cdc.gov/cancer/npcr/value/causes.htm. Accessed on April 4, 2019.

  5. “Mesothelioma” National Cancer Institute. Retrieved from https://seer.cancer.gov/csr/1975_2015/results_merged/sect_17_mesothelioma.pdf/ Accessed on April 4, 2019.

  6. “Quality Cancer Data Saves Lives” Centers for Disease Control and Prevention. Retrieved from https://www.cdc.gov/cancer/npcr/pdf/QualityData90min.pdf. Accessed on April 4, 2019.

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