Join the National Firefighter Registry

Thank you for having me.

Yeah, at its most basic level, the National Firefighter Registry is a voluntary program to track cancer among U. S. firefighters. And it’s open to all firefighters, so career or volunteer, active or retired, and those with or without cancer.

And it was created through legislation, the Firefighter Cancer Registry Act of 2018. And our primary objective is to create a voluntary registry that reflects our nation’s diverse firefighters, that captures some basic information about firefighters and their work, that can be used to evaluate how those work factors relate to cancer outcomes over time, which is what we’ve done.

And any firefighter in the country can register now at nfr.cdc.gov.

So, it’s pretty easy and we wanted to make it as user friendly as possible. So, firefighters would go to that URL, nfr.cdc.gov, confirm their eligibility, and then click on the login button. And that allows them to then create an account using multifactor authentication.

I think most of us are familiar with that these days. And then once they create the account it takes them back to the web portal. And they would consent and fill out their user profile and questionnaire. And once they complete their questionnaire, they’re registered. They’re in the system.

So, it’s kind of both. So, it’s a one-time thing in the sense that once you complete the registration, you’re registered. And so, if we never hear from you again, that’s okay because we would have enough information from you that if you were to be diagnosed with cancer, we’ll be able to pull in that information from the state in which you live.

So, cancer is a reportable illness in all 50 states. So, cancer diagnoses are already being recorded in those states and we would be able to pull in that information.

There are follow up questionnaires that are optional. That will be every, 15 months or so, we’ll have a follow-up questionnaire. But, you know, we know some firefighters will register and we won’t hear from them again. But obviously we want firefighters to participate in those follow-up questionnaires if they can.

So, the questionnaire asks questions about work history, current health status, lifestyle, and then of course there’s a section about demographics because we want to know about the individual. And the demographics section, that’s important information for linking to the cancer databases that exist.

So, that’s going to be name, address, and then we are asking for the last 4 digits of social security number. And that just allows us to make sure that we’re linking to the proper cancer diagnosis. If, God forbid, a firefighter were to be diagnosed with cancer. The work history questions that’s really asking about what have firefighters done over their career? What departments did they serve in and trying to estimate how many responses and different types of fires that firefighters have had.

And you know, from my perspective as an industrial hygienist, I think it’s actually maybe the most important part of the survey because we’re trying to understand what it is about firefighting that is causing elevated rates of cancer among firefighters.

And that’s one way to do that. But we’re also going to be hopefully pulling in incident records from fire departments. And maybe eventually, I know USFA is in the process of modernizing the NFIRS system, so hopefully in the future we’ll also be able to collaborate with USFA in pulling in those incident records.

And that’ll be really nice because we won’t have to get that information directly from the firefighters. We can get it through an existing system.

Yeah. So, the answer to that is kind of like yes and no. So, part of the enrollment process, as I mentioned, involves completing a questionnaire, and that includes questions on work history. But we also have some questions about major long-lasting events.

So, we’ve heard from firefighters around the country, and especially here recently with the East Palestine train derailment and the plastics recycling facility in Richmond. I mean, those were major events that firefighters responded to.

So, we’ve heard from firefighters about concerns from those unique exposures. So, we are collecting information about those events. Use of AFFF foams. So, all that information that we’re capturing is important for understanding exposure. But we’re not really getting into like the nuts and bolts of like the different pathways or the actual biological levels of exposure.

So, we’re not really doing that through the NFR, but there are other great studies that are being done that are doing that. And there is the possibility, and we are exploring that possibility of trying to even collaborate with some of those other studies that are collecting those biological samples.

So, the Firefighter Cancer Registry Act was focused on cancer outcomes. And so, that’s what gives us our authority to run the National Firefighter Registry.

That said, our enrollment questionnaire does collect information on other health conditions, because those conditions could be related to specific cancer risk. So, we are collecting some information, self-reported information, about those other conditions like heart disease, or diabetes, or arthritis, etc.

We’ll also be doing linkages to the National Death Index. Which is a database of all causes of death in the United States. And so, that will give us some idea, you know, down the road many years from now, will help us to identify whether there are other causes, other diseases that ultimately lead to mortality that could be related to firefighting.

But to fully assess other health outcomes, the Firefighter Cancer Registry Act would actually need to be amended. And it is actually up for reauthorization this year. So, it’s possible that some new language could be added to it.

Yeah. So, first I totally get it. And one of the reasons that it has taken us several years to launch the NFR is because data security was a top priority for us. And we actually built the NFR system to meet all the current federal data security requirements and including recent regulations.

So, it is meeting the very strictest federal data security requirements. As I mentioned, the web portal has factor authentication to make sure you are who you say you are. It uploads data to a secure and encrypted database each time a participant clicks save and continue. We also have an assurance of confidentiality, which provides the highest level of privacy for this type of data, and basically means we can’t share identifiable information with anyone outside of NIOSH and the NFR program, even under court order.

So, we’ve taken all the necessary steps to make sure that the system is really rock solid, has all the data security elements to it and is able to maintain confidentiality.

So, this is for all firefighters, career or volunteer, active or retired, structural or wildland and all the subspecialties in between.

I can’t emphasize that point enough. It’s not a cancer registry because you do not need to have cancer to enroll. And, in fact, if only firefighters with cancer were to enroll, we would have trouble drawing any conclusions regarding firefighter’s cancer risk. So, we really need firefighters with and without cancer to enroll because we want to know what it is about firefighting that is associated with elevated rates of cancer.

So again, it’s for all firefighters. We need everybody to enroll. The more people, the more diverse the population of firefighters that we get to enroll, the more we can learn about how firefighting is associated with cancer.

Correct. Enrollment takes about 30 minutes, and it could be a bit longer if you’re a more veteran firefighter. It could be quite a bit shorter if you’re a newer firefighter. But firefighters will go to nfr.cdc.gov and follow the prompts, and after enrolling, we’ll have enough information from firefighters that if they were to be diagnosed with cancer, we can pull in their cancer diagnoses from the state in which they live, and that’s a really important point. Because firefighters will not need to report their cancer to NIOSH, and let’s face it, that’s the last thing on anyone’s mind.

So, instead, we’ll be leveraging those existing data systems. And as I mentioned, all 50 states have these databases of cancer diagnoses, so that’s already happening.

What’s not happening is most states do not collect detailed information about occupation. And if you’re a volunteer firefighter, you know, they’re not going to collect firefighting as your occupation.

Exactly. Or if you’re a career firefighter who’s retired, they may not collect your occupation. So, and like I said, some states don’t collect any occupation in those cancer databases. So, if a firefighter were to develop cancer, researchers would not know they are a firefighter.

Or what they’ve done as a firefighter, unless they provide that information to us through the National Firefighter Registry. So, that’s what we’re doing. And yes, there’s follow-up questionnaires. We hope to capture incident records. But we know we won’t get that from everybody. We’ll take what we can get.

I think the data we’re going to get is going to improve over time. In part because of a lot of the great work that’s being done at USFA and with some of the other organizations out there to try to better understand firefighter’s exposure. So, we’re going to hopefully, you know, over time that’ll get better, and we’ll get great data.

But all that data will feed into the NFR database and that’s when the real work begins. So, you know, we’ll do comprehensive analyses of the data to identify which factors are associated with increased cancer risk, for specific cancers including job categories and exposures, we can do internal analyses where we look at different types of job titles in the fire service or, you know, increasing exposures. Do we see increasing cancer rates?

We can do external analyses where we compare firefighters to the general population. So, that’s when we can really start to understand which types of cancer are truly elevated in firefighters. You mentioned IARC. IARC found 2 types with strong evidence. That’s it. Out of the 30 to 40 primary cancers we commonly study.

So, there’s a lot more work to be done, and I really believe that the NFR can, you know, help answer some of those questions that are still out there. One of those questions is control measures. A lot of very progressive departments are implementing all these control measures to keep the gear clean, to keep firefighters out of the building once it’s been suppressed or make sure they’re on air when they’re inside doing overhaul.

So, we can start to look at, are those control measures actually helping to reduce firefighter’s cancer risk? And then that provides even more evidence for broader adoption of those measures. And those, you know, those analyses will take many years to conduct and, and report out on. But we’re committed to getting those results into the hands of leaders in the fire service and public health and medical communities as quickly as we can. And our ultimate goal is to reduce firefighter’s risk of cancer.

It’s going great. It’s been about 3 weeks. And we actually did our big announcement at FDIC last week. So, exactly 1 week ago, FDIC is the largest firefighter conference in the country. And right now, we have over 3,000 firefighters who have enrolled and actually after the FDIC announcement, we’ve had 1,000 just from that point. So, I think, you know, we’ve got a lot of interest, a lot of excitement, pretty much all the major fire service organizations are behind this. They support it, and they’re helping us to get the word out there.

But, you know, please, if you’re listening to this podcast and this is something that you support, that you understand the importance as a firefighter, please let your brothers and sisters in the fire service know. It’s not going to be successful unless we get everybody to join this. So, spread the word and yeah.

Yeah. So, a hundred percent. Like you said, there’s a million firefighters in the United States. There’s probably about that many who have retired.

Right. So, that’s a lot of firefighters. Our goal is 200,000. It’s an ambitious goal. It would make the NFR one of the largest occupational cohorts ever assembled.

But with that, we can learn so much more that can benefit the fire service for generations to come. And we especially need female firefighters and firefighters of color and volunteer firefighters, and wildland firefighters and arson investigators. I mean, these are all these different groups of firefighters that we really don’t understand what their cancer risk looks like because they haven’t been involved in sufficient numbers in previous studies to draw any conclusions.

And so, you know, for that reason, it’s so critical that we get firefighters across the country. Even if you look at the biggest study, cancer study, that’s been done in the United States for firefighters, they came from 3 departments, San Francisco, Philadelphia and Chicago. 3 departments out of thousands in the United States.

Right. So, we need a lot more people to get involved in this so that we can have a very thorough and complete picture of the cancer problem in the U.S. fire service.

Well, yeah, at least 200,000.

No, I mean we did a lot of testing for the NFR web portal, the enrollment system and you know, we’ve heard from firefighters that, well, 30 minutes is, you know, that’s a long time.

But what I would say is you spend 30 minutes, you know, I watched a TV show last night for 30 minutes. I mean, we spent 30 minutes doing the most mundane tasks.

Exactly. So, what I would say is 30 minutes, take 30 minutes and register. And you can have a lasting impact on your profession and your brothers and sisters in the fire service today and future generations. It’s one thing that we can do together to try to make a difference and, and hopefully get to a point where the cancer rates are matching the general population and not as big of a problem as they are today.

It’s my pleasure. Thank you for having me and thank you and USFA for all that you do for the fire service.