[Federal Register Volume 84, Number 60 (Thursday, March 28, 2019)]
[Notices]
[Pages 11798-11799]
From the Federal Register Online via the Government Publishing Office [www.gpo.gov]
[FR Doc No: 2019-05971]


=======================================================================
-----------------------------------------------------------------------

DEPARTMENT OF HEALTH AND HUMAN SERVICES

Centers for Disease Control and Prevention

[Docket No. CDC-2019-0022; NIOSH-326]


National Firefighter Registry; Request for Information

AGENCY: Centers for Disease Control and Prevention, HHS.

ACTION: Request for information.

-----------------------------------------------------------------------

SUMMARY: The Centers for Disease Control and Prevention (CDC) in the 
Department of Health and Human Services (HHS) announces the opening of 
a docket to obtain information regarding the development and 
maintenance of a voluntary registry of U.S. firefighters. The purpose 
of the Registry will be to collect health and occupational information 
for the purpose of determining cancer incidence. CDC is seeking input 
on approaches to maximizing firefighter participation in the Registry 
and coordination of data collection.

DATES: Comments must be received by May 28, 2019.

ADDRESSES: Comments may be submitted electronically, through the 
Federal eRulemaking Portal: http://www.regulations.gov, or by sending a 
hard copy to the NIOSH Docket Office, Robert A. Taft Laboratories, MS-
C34, 1090 Tusculum Avenue, Cincinnati, OH 45226. All written 
submissions received must include the agency name (Centers for Disease 
Control and Prevention, HHS) and docket number (CDC-2019-0022; NIOSH-
326) for this action. All relevant comments, including any personal 
information provided, will be posted without change to http://www.regulations.gov.

FOR FURTHER INFORMATION CONTACT: Rachel Weiss, Program Analyst, 1090 
Tusculum Avenue, MS: C-48, Cincinnati, OH 45226; telephone (855) 818-
1629 (this is a toll-free number); email [email protected].

SUPPLEMENTARY INFORMATION: The Firefighter Cancer Registry Act of 2018 
(42 U.S.C. 280e-5) requires that CDC develop and maintain a voluntary 
registry of firefighters (Registry) to improve the nationwide 
monitoring of cancer rates among firefighters and to make the resulting 
epidemiological information and analysis publicly available. In order 
to develop the Registry, CDC is soliciting public comments from any 
interested party on a strategy for inclusion of firefighters in the 
Registry and to coordinate data collection activities.
    The National Firefighter Registry will be constructed primarily for 
the purpose of determining cancer incidence and trends among 
firefighters. Data submission will be voluntary. In order to develop an 
accurate picture of cancer incidence among the firefighting community, 
the Registry will be designed to collect information on volunteer, 
paid-on-call, and career firefighters, independent of cancer status or 
diagnosis. Such information may include basic demographic information, 
number of years and time period(s) as an active firefighter, number of 
fire incidents attended, details of any cancer diagnosis, additional 
risk factors such as smoking or drug use, and relevant medical history. 
This information will be collected periodically from Registry 
participants and other sources. CDC is further required to ensure that 
data and analyses in the Registry are available to the public, as 
appropriate, subject to relevant Federal and state privacy protections 
such as de-identification of personally identifiable information.
    CDC is considering three different strategies to recruit 
participants into the Registry, as described below. Each approach has 
strengths and limitations, and it may be necessary for CDC to use a 
combination of all three strategies in order to reach reliable 
conclusions applicable to the general population of firefighters as 
well as specific subgroups. Each approach proposed below will require 
obtaining informed consent from every firefighter who agrees to 
participate in the Registry, prior to the collection of data. The 
informed consent document would describe the purpose of the Registry; 
how health, occupational, and contact information will be maintained, 
updated, and potentially used; the privacy protections afforded by 
applicable Federal laws and procedures to protect such data; and other 
relevant information.

Recruitment Strategy Options

1. Convenience Sampling--Open Enrollment

    CDC would develop a secure web portal to allow current and former 
volunteer, paid-on-call, and career firefighters to provide information 
to the Registry, including demographic information, as well as relevant 
occupational and personal health history. CDC would consult with fire 
service stakeholders on methods to raise awareness and to notify their 
members about the open enrollment web portal.
    An open enrollment design may limit the ability of researchers to 
make statistical inferences because those who enroll in this manner may 
be different from the general population of firefighters. Nevertheless, 
Registry data from these participants may be helpful to CDC researchers 
in generating hypotheses for future research studies. Further, this 
approach would provide the opportunity for any fire service members to 
participate in the Registry and for CDC researchers to have a quick and 
cost-effective means for cross-sectional analysis of characteristics 
relevant to firefighter health and safety.

2. Organizations-Level Probability Sampling--Recruit Participants 
Through Professional Associations

    CDC would consult with firefighter organizations to identify 
current and former members who worked during a

[[Page 11799]]

specified time frame (e.g., 2000-2018) for the purposes of direct 
solicitation. These organizations represent different groups of 
currently employed (and, in some cases, former) firefighters, including 
career and volunteer firefighters; sub-specialties of the fire service, 
such as arson investigators, instructors, wildland firefighters, and 
airport rescue firefighters; and specific demographic groups, such as 
minority and female firefighters, and volunteer firefighters. This 
strategy would allow CDC to contact members from these organizations 
for voluntary participation in the Registry.
    A strength of this approach is that, because firefighter 
organizations reach a vast majority of the firefighter workforce, 
populations representative of specific subgroups of firefighters are 
more likely to be represented. However, recruiting participants using 
this method alone may be time-intensive and costly, and could result in 
a limited sample that is not representative of the entire population of 
firefighters.

3. Fire Department-Level Probability Sampling--Study Population From 
Select Fire Departments

    CDC would obtain a list of fire departments from the U.S. Fire 
Administration's National Fire Department Registry and other sources to 
request identification of current and former firefighters who worked 
during a specified time frame (e.g., 2000-2018). CDC would then match 
the rosters of current and former firefighters against the National 
Death Index (NDI) to determine vital status. Living individuals would 
be directly contacted (or directed to the web portal) for voluntary 
recruitment into the Registry. For those firefighters determined to be 
deceased, the cause of death would be included in the Registry 
database.
    This recruitment method would facilitate reaching large numbers of 
firefighters by obtaining immediate access to fire department rosters 
of current and former employees. Depending on the participation rate, 
this method could yield a Registry population representative of the 
general population of firefighters and inclusive of specific subgroups 
of firefighters. However, this approach would require CDC to obtain 
approval from individual fire departments and coordination with their 
personnel systems, in addition to contacting members directly, which 
may be time-intensive and costly.

CDC Is Seeking Input From All Interested Stakeholders

    In order to recruit firefighters to participate in the National 
Firefighter Registry, CDC seeks input and advice from all interested 
stakeholders in response to the following questions:
    1. How should CDC define ``firefighter'' for the purpose of 
creating the Registry?
    2. What are the strengths and weaknesses associated with CDC using 
a combination of all three of the recruitment and enrollment strategies 
described above?
    3. If CDC were to focus on only one or two of the enrollment 
approaches described above, which one(s) should be used, and why?
    4. Are there other recruitment and enrollment methods that CDC 
should consider? If so, please describe them.
    5. What are some ways to maximize firefighter participation in the 
Registry?
    6. Which under-represented or under-studied groups of firefighters 
should be included in the Registry? Are there unique data collection 
needs that should be considered to allow sufficient representation of 
minority, female, and volunteer firefighters? Are there any other 
unique characteristics of these under-represented or under-studied 
groups that should be considered or addressed in the Registry?
    7. What are the preferred methods for communicating with 
firefighters in order to increase awareness of the Registry and to 
communicate research findings?
    8. If CDC were to solicit participation from fire departments, what 
criteria should be used in selecting those departments?
    9. What are some ways to maximize the participation of fire 
departments in efforts to recruit firefighters?
    10. What are strategies that can be used to recruit volunteer fire 
department members?
    11. What are strategies that can be used to solicit cooperation of 
fire departments for the purpose of recruiting women and minority 
firefighters?
    12. Do volunteer fire departments retain employment records and 
fire incident records?

    Dated: March 25, 2019.
Sandra Cashman,
Executive Secretary, Centers for Disease Control and Prevention.
[FR Doc. 2019-05971 Filed 3-27-19; 8:45 am]
BILLING CODE 4163-19-P