It’s dinner time at the firehouse. Your engine and rescue crew are sitting down to a well-deserved meal after a day of training and a handful of medical calls and false alarms. The tones sound, and a familiar voice (often electronic these days) begins to methodically dole out an important list of information.

From the first sound of that tone everything stops. Your ears key into that voice, and you begin to hear and process those first bits of information: location, incident type, responding trucks, engines, etc. – the most important things a crew needs to know at the start.

Firefighters will also consider a variety of things while en route, such as time of day, weather conditions, traffic congestion, water supply and access. Officers will review all notes on the mobile data terminal and/or audible information provided by dispatch. While the crew approaches the scene, they may look for signs to help with decision making, such as the smell of something burning in the area or a column of thick black smoke. In most cases, the incident commander will conduct a 360-degree size-up of the incident to gather even more information.

Just as paramedics, firefighters, and company as well as chief officers want as much information as possible for the incident they’re dispatched to, researchers need adequate information to help identify areas of concern and determine effective prevention strategies. Without this data, researchers are ill-equipped to help the fire service fight back against its most pressing issues, including occupational cancer.

National Firefighter Registry for Cancer

Fortunately, firefighters can provide much of this data by voluntarily enrolling in the National Firefighter Registry  for Cancer. The NFR, which is mandated by law and managed by the National Institute for Occupational Safety and Health, is the largest effort in the United States to better understand and reduce cancer in firefighters.

Enrolling is relatively easy. Firefighters can visit NFR.cdc.gov and create their account, sign the consent form, and complete their user profile in as little as five to 10 minutes. The questionnaire, which collects critical information about their time in the fire service, takes a bit longer, but firefighters can complete it at their leisure by logging in and out of the web portal.

Importantly, firefighters do not need to report a cancer diagnosis to NIOSH. Cancer is a reportable illness in all 50 states. However, most states do not collect detailed information related to an individual’s occupation. By enrolling in the NFR, if you are ever diagnosed with cancer, even 20 years down the road, NIOSH is able to pull in your cancer diagnosis and match it to your profile, hence, combining your work history and other information with your cancer diagnosis.

You may be thinking, “I don’t have cancer now and don’t intend to get cancer in the future, so the NFR doesn’t apply to me?”

Firstly, we sincerely hope that no one gets cancer, but unfortunately, cancer is relatively common. In the United States, 40.5% of men and women will be diagnosed with cancer at some point in their lives (Cancer Statistics – NCI). Secondly, even if you are never diagnosed with cancer, your information is still extremely useful. Having firefighters with and without cancer enrolled in the NFR allows researchers to examine what factors are most associated with increasing cancer risk. Your participation helps the entire fire service and especially those who have an unfortunate cancer diagnosis.

Firefighters of all different backgrounds are critical to the success of the NFR. The NFR is especially interested in studying cancer risk among groups who have been historically under-represented in research. This includes firefighters in rural areas, volunteer firefighters, women firefighters, racial and ethnic minority groups of firefighters, and various sub-specialties of the fire service (wildland, military, airport, and industrial firefighters, as well as investigators, instructors, and inspectors).

NIOSH’s goal is for 200,000 firefighters to enroll in the NFR. That sounds like a lot, but it’s only around 10% of the total eligible population (there are about 1 million active firefighters and another million who have left the fire service).

Knowledge Gaps

In 2022, the International Agency for Research on Cancer classified the profession of firefighting as a Group 1 known carcinogen to humans. This was based on sufficient evidence of increased risk of mesothelioma and bladder cancer in firefighters. IARC also found limited evidence for colon cancer, prostate cancer, testicular cancer, melanoma of the skin, and non-Hodgkin lymphoma.

Many knowledge gaps have been identified through the research that fed into the IARC evaluation. The truth is there’s a lot we don’t know.

There may be other cancers that occur at higher rates and/or at younger ages in firefighters than the general population, but we currently have incomplete data to examine this. Cancer risk may also vary between men and women, among different racial and ethnic groups, across the different specialties of the fire service, and even regionally across the U.S., but we haven’t been able to evaluate this yet.

We don’t fully understand how occupational exposures contribute to the cancer risk – in part because there is no national database that contains information on firefighters’ incidents and exposures. This knowledge gap is exacerbated by the increasing incidence of natural disasters and other major events. We don’t know the extent that responding to these events impacts one’s cancer risk.

Potential Impact

Much of the information needed to fill these knowledge gaps is being collected through the NFR. When this data is collected for hundreds of thousands of firefighters, and further matched to cancer diagnoses over time, researchers can begin to answer the difficult questions that remain and provide findings that support new policies or procedures. Over time, the NFR may be able to:

  • Identify cancers that have not previously been associated with firefighting. This could lead to increased medical surveillance for these cancers.
  • Find that firefighters are diagnosed at younger ages for some types of cancer. This could lead to revised cancer screening guidelines.
  • Identify specific work factors that increase firefighters’ risk of cancer. This could lead to revised policies, procedures, or even equipment.
  • Identify protective practices associated with reduced cancer risk. This could provide evidence to support the funding and adoption of these practices more broadly.

Privacy and Data Security

Privacy and data security are top priorities for the NFR. Firefighters register for the NFR through a secure website using multi-factor authentication. They then create an account through Login.gov, which is a single sign-on solution for U.S. government websites. When completing the registration process, firefighters are automatically logged-off if there is no online activity for five minutes. When they save or submit the questionnaire, their information is recorded on a secure encrypted database.

Only authorized NIOSH researchers will have access to identifiable information collected as part of the NFR. Data collected through the NFR are protected by an Assurance of Confidentiality, which is the highest level of protection available for public health data. The AoC states that no identifiable information may be disclosed without the consent of the individual and is even protected from subpoena.

Just as data are critical to effectively respond to structure fires and other emergency incidents, data is critical for our collective evaluation of cancer in the fire service. Your individual information, including details about your career, is vital.