National Firefighter Registry Subcommittee (NFRS)
The Firefighter Cancer Registry Act of 2018 mandated the Centers for Disease Control and Prevention (CDC) to create a voluntary registry of firefighters to collect health and occupational information to determine cancer incidence in the U.S. fire service. In response to this mandate, CDC’s National Institute of Occupational Safety and Health (NIOSH) established the National Firefighter Registry (NFR).
The Act also mandated consultation with relevant stakeholders regarding the NFR, including:
- Public health experts with experience in developing and maintaining cancer registries;
- Epidemiologists with experience in studying cancer incidence;
- Clinicians with experience in diagnosing and treating cancer incidence;
- Active and retired, paid-on-call, and career firefighters as well as relevant national fire and emergency response organizations;
- State health agencies; and
- State departments of homeland security.
To meet this requirement, NIOSH’s Director, Dr. John Howard, charged the NIOSH Board of Scientific Counselors (BSC) to develop a subcommittee with two co-chairs from the BSC at large to provide advice on establishing and operating the NFR. Additionally, Dr. Howard asked the subcommittee to advise on the following issues required by the Act:
- Increasing awareness of the NFR and encouraging participation among volunteer, paid-on-call, and career firefighters.
- Consideration of unique data collection needs that may arise to generate a statistically reliable representation of minority, female, and volunteer firefighters, including methods, as needed, to encourage participation from such populations.
- Information on how the Secretary will store data and provide electronic access to relevant health information.
- Working in consultation with the experts included in the subcommittee to develop a reliable and standardized method for estimating the number of fire incidents attended by a firefighter as well as the type of fire incident so attended in the case such firefighter is unable to provide such information.
- How new information about firefighters will be submitted to the NFR.
- How information about firefighters will be maintained and updated in the NFR over time.
- A method for estimating the number of fire incidents attended by a firefighter as well as the type of fire incident so attended in the case such a firefighter is unable to provide such information.
- Further information, as deemed necessary.
See the full NFRS charge [PDF – 289 KB].
The NFRS will meet as needed. NFRS meetings are open to the public virtually. Virtual attendance will be provided as indicated in the Federal Register Notices published for each meeting. Please see the registration page for more details.
- Meeting agenda
- Federal Register Notice – June 8, 2020
- Transcript of the Meeting of the National Firefighter Registry Subcommittee Meeting held on July 14, 2020
- Report of the National Firefighter Registry Subcommittee, as approved by the NIOSH Board of Scientific Counselors: Review, Advice, and Recommendations for the Registry Protocol and Questionnaire
- Meeting slides
- Follow-up documents
- Meeting agenda
- Federal Register Noticeexternal icon – April 7, 2020
- Federal Register Noticeexternal icon – May 13, 2020
- Draft NFR Protocolpdf icon for review
- Presentationpdf icon on the NFR (updated on May 14, 2020)
- Transcript of the Meeting of the National Firefighter Registry Subcommittee Meeting held on May 15, 2020
Questions for Input
- What is the best way to estimate lifetime exposures and changes in implementation of controls over time as a firefighter? What role should follow-on or repeat questionnaires, or department-level surveys, play in this data collection?
- What other important variables related to cancer risk should be collected as part of the enrollment process and what should be included in follow-on surveys (e.g., lifestyle factors and secondary jobs)? Please keep in mind we would like to limit the time burden on participating firefighters for the initial enrollment process to 30 minutes or less.
- What are the barriers to participation and what can NIOSH do to increase participation? What is the best process for recruiting states that require firefighter certifications?
- Should NIOSH implement eligibility criteria for the fire department sampling frame?
- What are the most effective routes for communicating the enrollment process, data security and confidentiality, and why the NFR program needs access to certain types of records?
- Are any crucial details missing from the protocol or consent form that would be needed for linking with population-based (i.e., state and territorial) cancer registries? How soon after initial enrollment should NIOSH seek to conduct cancer registry linkages nationally?
Comments on Protocol
You can submit comments on the protocol in two ways: verbal comments at the meeting or written comments.
Verbal comments at the meeting:
Those that want to comment on the draft NFR Protocol during the Subcommittee meeting can sign up to provide verbal comments. Each verbal commenter will have up to five minutes for comment. A limited number of time slots are available and will be assigned on a first come-first served basis. Please contact the NIOSH BSC Subcommittee Executive Secretary for scheduling purposes if you wish to address the Subcommittee (see contact information below).
Written comments will also be accepted. You can send written comments directly to the Docket for the NFRS at NIOSH Docket Office, Docket #232, 1090 Tusculum Avenue, Mail Stop C-34, Cincinnati, OH 45226, or email them to firstname.lastname@example.org. The Docket number must be specified on the comments. Comments received by May 6, 2020, will be provided to the Subcommittee prior to the meeting. The docket will close May 22, 2020 and the National Firefighter Registry Program will consider all comments received when developing the final protocol.
Executive Secretary contact information:
Paul J. Middendorf, Ph.D.,
Executive Secretary, National Firefighter Registry Subcommittee of the NIOSH Board of Scientific Counselors,
Telephone (404) 498-6439, or email at email@example.com.
Dr. Grace LeMasters
Professor – Emeritus
Department of Environmental Health
College of Medicine
University of Cincinnati
160 Panzeca Way
Kettering Lab Complex, ML 0056
Cincinnati, Ohio 45267
Phone: (513) 253-8747
Fax: (513) 558-6672
Assistant General President for Health, Safety and Medicine
International Association of Fire Fighters
1750 New York Avenue, N.W. – 3rd Floor
Washington, DC 20006
Phone: (202) 824-1570
Designated Federal Official
National Institute for Occupational Safety and Health
Centers for Disease Control and Prevention
Phone: (404) 498-2581
Fire Protection Specialist
New York State Division of Homeland Security and Emergency Services
Office of Fire Prevention and Control
Fire Training and Education Branch
State Office Campus
1220 Washington Avenue, Building 7A, Floor 2
Albany, NY 12226
Phone: (518) 380-0630
Deputy Fire Chief
Pasadena Fire Department
215 North Marengo, Suite 195
Pasadena, CA 91101
Phone: (661) 904-5075
Mesa, AZ 85204
Dr. Sara Jahnke
Center for Fire, Rescue & EMS Health Research
1920 W. 143rd Street, Suite 120
Leawood, Kansas 66224
Phone: (913) 681-0300
North American Association of Central Cancer Registries
250 West Iles
Springfield, IL 62704
Phone: (217) 698-0800
Dr. Barbara Materna
Chief, Occupational Health Branch
Center for Healthy Communities
California Department of Public Health
850 Marina Bay Parkway, Building P-3
Richmond, California 94804
Phone: (510) 620-5730
Fax: (510) 620-5743
National Volunteer Fire Council (NVFC)
Whitesboro, New York 13492-2206
Phone: (315) 552-8245
Dr. Steven M. Moffatt
National Institute for Public Safety Health
6612 E. 75th Street, Suite 200
Indianapolis, IN 46250
Phone: (317) 972-1180
National Fallen Firefighters Foundation
PO Drawer 498
Emmitsburg, MD 21727
Fire Department of New York
Phone: (718) 749-7633
494 Dean Street
Brooklyn, NY 11217