IF YOU HAD 20,000 firefighters at your side, what could you do? Or 200,000 firefighters? With that number, you could move a mountain.
And that is exactly what the National Institute for Occupational Safety and Health (NIOSH) is going to do with its National Firefighter Registry for Cancer (NFR). The mountain NIOSH wants to move, of course, is cancer in the fire service.
Goal: 200,000 Firefighters
About 20,000 firefighters will have taken the time to complete the NFR registration process by the time you read this. Enrolling 200,000 firefighters is the goal NIOSH researchers laid out when the NFR was in its planning and development phases.
“We can do a lot of meaningful research with 20,000 firefighters,” says Dr. Kenny Fent, a research industrial hygienist with NIOSH and a captain in the U.S. Public Health Service. He is also the manager of the NFR. “But to get closer to fully understanding the relationships between firefighting and cancer, we need a large body of participants from all the segments of the firefighting community. That’s where the ambitious 200,000-firefighter goal comes from. That’s where we can get impactful data that can lead to recommendations for how to reduce cancer in the fire service.”
To many, the NFR sounds familiar. Yet, it is often confused with other initiatives. Maybe those initiatives have similar sounding names. For example, some states may be doing their own cancer research, which can confuse some. Others mistake NFR for things like exposure tracking. So, what exactly is the NFR and how did it come into existence?
On July 7, 2018, the Firefighter Cancer Registry Act became federal law. This congressionally mandated and funded law required NIOSH to build a registry of firefighters to collect work history and other information that will be used to study cancer among firefighters. Congress required that the registry be voluntary, meaning firefighters who submit information must do so on their own. Fire department leaders cannot simply add or authorize their firefighters’ data to be taken or entered.
Source: National Firefighter Registry.
The law also required NIOSH to connect the NFR to state-based cancer registries. Federal law makes cancer a reportable diagnosis in all 50 states. Each state has its own population-based cancer registry for this purpose. NIOSH designed the NFR to link to all those state-based cancer registries.
Here’s why that link is important. When any firefighter who signed up with NFR later receives a cancer diagnosis, the NFR can find information about that diagnosis and attach it to that firefighter’s information—without the firefighter ever having to do anything. It doesn’t matter if the firefighter was career, volunteer, wildland, or private. It doesn’t matter in which state the firefighter served or in which state the firefighter received the cancer diagnosis. The NFR seamlessly links the cancer diagnosis with time spent as a firefighter. This linking process will be conducted every few years over time to continue monitoring for new cases of cancer among NFR participants.
State cancer registries often collect very limited occupational data about cancer patients. This data is usually not detailed or accurate enough to learn and record if a patient served as a volunteer or military firefighter. Also, cancer patients who are retired firefighters might not have any occupational data in their cancer registry record at all since they were retired at the time of their diagnosis. Being enrolled in the NFR ensures that connection to time served as a firefighter is made.
Secure Site
That wasn’t the only heavy lift for getting the NFR off the ground. Not only did the NIOSH team have to create the questionnaire that would yield meaningful data and link to all state cancer registries, but they also had to ensure the NFR site was as secure as the most sensitive tax information.
It doesn’t matter in which state the firefighter served. NFR seamlessly links the cancer diagnosis with time spent as a firefighter.
Enrolling in the NFR includes creating a secure account and completing informed consent. To keep the users’ information secure, the site uses multifactor authentication. For example, the site will send a unique code to a phone or email, which people then enter during registration to confirm they are really who they say they are. For most, this initial account-creation process takes about five minutes.
When firefighters complete their user profile and enrollment questionnaire, the data is stored securely with multiple layers of encryption. Individuals’ information is kept confidential and only accessible to NIOSH researchers.
Once that infrastructure was built and tested, NFR went live in April 2023. That’s when those 20,000 firefighters began signing up. NFR is open to all firefighters. That includes career, volunteer, wildfire, private, airport, military, and industrial firefighters. It includes active firefighters as well as those who have retired or left the fire service for any reason. It is open to all firefighters, regardless of whether they have had a cancer diagnosis.
“We are seeing firefighters enroll from all parts of the United States,” Fent says. “And while that is great, our researchers are eager to use NFR data to dive into traditionally harder-to-reach segments of the fire service. Female firefighters, volunteers, indigenous, and wildfire firefighters have been a challenge to study. The NFR gives us an opportunity to learn much more about any special risks those specific groups may face when it comes to cancer. But first, we need them to register.”
Registration Is Easy
For many firefighters, registering for the NFR can take 30 minutes or more. Firefighters entering the academy can get through it in about 10 minutes. That may sound like a lot. However, if firefighters cannot complete the entire process in one sitting, the system will remember where they left off and allow them to pick back up. Also, registration only has to be done once. Again, the NFR is sometimes confused with exposure tracking, which requires entering data after every fire incident. NIOSH will prompt firefighters to update or provide new information every few years, but frequent updates are not required.
The questions are lumped into four broad categories: demographics, work history, health history, and lifestyle. The NFR site has a progress bar to show firefighters how far along in the registration process they are and what is coming next.
Some seasoned firefighters report getting tripped up in the work history section. Here, NIOSH advises firefighters to get as close as possible to things like the number of fires they’ve been to and the different ranks they’ve held in different departments. But estimating this information is just fine. “It is better to provide a close estimate than to not provide any work history information for fear of being inaccurate,” Fent says.
The other parts of the registry get into personal information like demographics; health history; family health history; and lifestyle choices like tobacco and alcohol use, exercise, and sleep habits. This is, in part, why the data must be so secure. Participants’ identifiable information cannot be shared outside NIOSH unless a participant gives written permission. Personally identifiable information is protected from release-even from subpoena. Hence, your response to the questions will remain confidential.
To get closer to that 200,000-firefighter goal, the NIOSH team has been attending and speaking at major fire and rescue educational events. They have been working with fire departments and regions to help firefighters sign up. They have been working closely with fire service associations like the National Volunteer Fire Council, Women in Fire, the International Association of Fire Chiefs Volunteer and Combination Officers Section, and the International Association of Fire Fighters.
NIOSH recently rolled out its Gold Helmet program. That effort awards a Gold Helmet distinction to any fire department that has either 300 firefighters or 50% of its staff registered with the NFR. So far, 10 fire departments have reached Gold Helmet status.
Fire departments that want to reach the Gold Helmet status or jumpstart their enrollment efforts can access all of the NFR educational and promotional material at cdc.gov/niosh/firefighters/registry/nfrcomm.html.
Call to Action
The reason for all this effort is to reduce the risk of cancer in the fire service. And it is a big problem.
In 2022, the International Agency for Research on Cancer, which is part of the World Health Organization, reclassified the profession of firefighting as a Group 1 known carcinogen to humans. To reach that conclusion, more than 25 experts from around the world evaluated the strength of the evidence that firefighting caused certain cancers in humans. Group 1 indicates the highest level of likeliness to cause cancer. Tobacco smoke and diesel exhaust are also classified as Group 1 carcinogens.
Furthermore, a very large NIOSH cohort study reported that firefighters are at a 9% greater risk of developing cancer and are 14% more likely to die from cancer than the general population.
“We are getting much better at understanding the cancer risks firefighters face,” Fent says. “We are also getting better at understanding best practices for mitigating those risks. But we have not solved the problem. We cannot afford to take our foot off the gas on this monumental threat to firefighter health and life. The NFR won’t be a magic potion to solve all our cancer problems, but it will get us much closer.”
Moving a mountain as imposing as cancer in the fire service will take effort from everyone. Being part of the NFR is something every current and past firefighter can do to make small work of this big problem.
To register with or learn more about the NFR, scan the QR code below.
Cancer in the fire service is a massive and imposing mountain. But, as the saying goes, many hands make quick work. Part of moving this cancer in the fire service mountain requires a lot of hands-like 200,000-doing a little bit of work by signing up for the NFR.
LINDSAY JUDAH, CFO, CTO, MIFireE, is a contractor for NIOSH and serves as a fire and emergency services consultant and graduate professor. She has a doctor of public administration from valdosta State university. She is a division chief of rescue for a metro fire rescue agency. Judah is an advocate for NFFF Everyone Goes home and NFR for Cancer, a peer reviewer for CPSE, and an IFSTA validation committee member. her published works can be located @ChiefJudah.
RICK MARKLEY is a contractor for NIOSH to enroll firefighters in NFR. he has been an editor and writer in the fire service and a volunteer firefighter for more than 15 years. he serves on the boards of directors for Science to the Station and the Firefighter Behavioral health Alliance. he is a volunteer with Firefighter Close Calls and is executive editor of CRACKYL Magazine.
