National Firefighter Registry for Cancer

The National Firefighter Registry for Cancer (NFR) is a voluntary registry of firefighters in the United States used to evaluate cancer rates and risk factors in the U.S. fire service through collecting relevant occupational, lifestyle, and health information on firefighters. It aims to use these data to reduce cancer in firefighters.

The NFR was created by the Firefighter Cancer Registry Act of 2018 in response to growing evidence of carcinogenic exposures and increased risk for cancer faced by firefighters. It opened to registration by firefighters in April 2023. The NFR is maintained by the U.S. National Institute for Occupational Safety and Health (NIOSH).

Cancer among firefighters
Cancer risk in the U.S. fire service is a topic of growing concern. Firefighters regularly encounter carcinogenic materials and hazardous contaminants on the fireground. Several studies have documented airborne and/or dermal exposures to carcinogenic compounds during firefighting, as well as contamination on turnout gear and other equipment worn by firefighters. Some of these compounds have been shown to absorb into firefighters’ bodies. Some firefighters also work with hazardous materials and are trained to control and clean up dangerous materials such as oil spills and chemical accidents. In addition to chemical exposures, night shift work has been classified by IARC as a probable human carcinogen.

Unlike structural firefighters, wildland firefighters typically do not wear respiratory protection, and may inhale particulate and other compounds emitted by the wildfires. A risk assessment conducted using an exposure–response analysis concluded that wildland firefighters could have an increased risk of lung cancer mortality.

Recent studies suggest that exposure on the fireground may increase risk to firefighters of certain types of cancer and other chronic diseases. In addition to epidemiological studies, several mechanistic studies using biomarkers have found evidence of DNA damage, oxidative stress, and epigenetic changes related to firefighters' exposures.

In 2022, IARC completed an evaluation on the carcinogenicity of the occupation of firefighting and reached a consensus classifying it as a known human carcinogen. This classification was based on sufficient evidence for increased risk of mesothelioma and bladder cancer among firefighters. Limited evidence of increasing risk among firefighters was also found for five other cancers: colon, prostate, testicular, melanoma of the skin, and non-Hodgkin lymphoma.

Data sources
While U.S. state cancer registries provide rich data for studying cancer in the U.S., they often do not provide comprehensive information on cancer patients’ work history  and workplace practices, making it challenging to use this data source alone for studying cancer in firefighters. It is also important to collect information on personal and lifestyle risk factors (e.g. tobacco and alcohol use, sleep deprivation, diet, and physical activity) in the U.S. fire service to better understand how they may affect the relationship between firefighting and cancer.

Due to the lack of central and comprehensive sources of data, research on cancer rates amongst firefighters has been challenging. Although some evidence suggests the risk for specific cancer types could vary for male, female, and non-white firefighters,    the strength of the evidence related to cancer in demographic subgroups is limited because many previous studies have mainly comprised white male samples of firefighters. Larger samples of female firefighters and minority groups are needed before the conclusions can be drawn about cancer risk across the nation’s diverse fire service. Additionally, the research on cancer for some subspecialty groups of firefighters, such as firefighter trainers, is limited.

Creation and implementation
The Firefighter Cancer Registry Act of 2018 bill was introduced in the U.S. House of Representatives on February 7, 2017, by Robert Menendez. It required the Centers for Disease Control and Prevention to create a registry designed to collect data on cancer rates among U.S. firefighters. The bill was passed with unanimous and bipartisan approval   on July 7, 2018.

The Congressional Budget Office estimated that the bill would cost around 10 million dollars. However, the Republican Policy Committee stated that the cost of the bill would be offset by a reduction in the funding of the CDC. NIOSH, part of the CDC, has been given authority to lead this effort, beginning in fiscal year 2019, with input from the scientific and firefighting communities.

It opened to registration by firefighters in April 2023. As of October 2023, over 48,000 firefighters had enrolled.

Operation
The proposed approach for the NFR states it will be a voluntary workplace health surveillance system of U.S. firefighters over the age of 18 years. The main goal of the NFR, according to the text of the law, is "to develop and maintain…a voluntary registry of firefighters to collect relevant health and occupational information of such firefighters for purposes of determining cancer incidence." According to the Republican Policy Committee's summary, the NFR aims to provide decision makers with data to help them create new protocols to protect firefighters. It aims to register around 200,000 firefighters across a variety of demographics within 5 years of launch. NIOSH plans to recruit firefighters through various communication channels (e.g., NFR website and newsletter, social media, local/state/national unions, affinity groups, trade journals, conference attendees) or directly from selected rosters of firefighters.

Participation in the NFR is entirely voluntary and is open to all firefighters, including retired ones. Firefighters who register will provide their name, date of birth, and sex; and may also provide information about their lifestyle and exposures. Following the initial enrollment, participants may be given voluntary yearly questionnaires. NIOSH can then use this information to track past and future diagnoses of cancer among NFR participants by matching with data from state cancer registries to understand how firefighters’ work impacts their risk of developing cancer.

Cancer is a nationally notifiable condition, and thus all U.S. states track diagnoses of cancer in a state cancer registry. The NFR plans to also seek additional details about participant’s types of emergency responses attended and exposures by working with fire departments and exposure tracking programs (if applicable), and by administering follow-up questionnaires to registered firefighters. Because cancer has a long latency period – which is the time between exposure to carcinogens and the development of cancer – the NFR will monitor cancer outcomes for decades.

The NFR program receives input and guidance from the NFR Subcommittee, a subcommittee of the NIOSH Board of Scientific Counselors (a Federal Advisory Committee), consisting of 12 rotating subject matter experts in firefighting, epidemiology, medicine, or public health.

Firefighter enrollment
All members can enroll through a web portal. NIOSH states that any information gathered through the program will only be accessible to NIOSH researchers and will be protected with multi-factor authentication and "multiple layers of encryption." Firefighters may access the web portal through the dedicated NFR website (https://www.cdc.gov/niosh/firefighters/registry.html or https://www.cdc.gov/NFR) or by directly accessing the web portal. To complete enrollment in the NFR, participants will need to set up an account, complete an informed consent document, user profile, and enrollment questionnaire.

The user profile will serve to collect basic information from the firefighter that could change over time and hence can be accessed and updated by the user. The enrollment questionnaire will collect information on employment/workplace characteristics, exposure, demographics, lifestyle factors, comorbidities, and other confounders. Most questions are optional. The enrollment process, including the questionnaire, is designed to take 30–45 minutes to complete if all questions are answered. Following enrollment, NIOSH will send NFR participants notifications for periodic voluntary follow-up questionnaires (e.g., one per year) to be filled out through the web portal.

Other sources of information
In addition to roster information, NIOSH plans to request fire incident records dating back to January 1, 2010, or earlier when available, from fire departments for some participants. Fire departments are required to collect some basic information about fire incidents under the National Fire Incident Reporting System (NFIRS) established by the U.S. Fire Administration. (The U.S. Fire Administration is in the process of replacing NFIRS with a new system called the National Emergency Response Information System (NERIS).) Department incident records will provide NIOSH investigators with apparatus and incident-specific information to be used as surrogates of exposure for exposure-response analyses. Specific variables of interest requested from department incident records may include: incident number, fire station, apparatus, incident type (structure fire, car fire, etc.), on scene time, off scene time, job assignments, number of fire runs, and duration at fires. NIOSH will explore the most efficient and least burdensome way of obtaining incident records from participating fire departments.