(5) Past studies examining cancer incidence 
among firefighters have been limited by the avail-
ability and standardization of important epidemio-
logical data, relatively small sample sizes, inconsist-
encies in the operationalization of key terms and 
metrics, incomplete employment histories, and an 
underrepresentation of minority, female, and volun-
teer firefighters. 
(6) Today, many States across the country 
maintain cancer registries that collect and collate in-
formation regarding cancer diagnoses, demographic 
information, and treatment plans. State cancer reg-
istries have greatly contributed to overcoming these 
obstacles by offering centralized repositories of infor-
mation, which researchers in the public and private 
sectors can access when conducting research on can-
cer risks. 
(7) While these State-based cancer registries 
undoubtedly contribute to furthering research re-
lated to assessing cancer incidence among fire-
fighters, a special purpose national cancer registry 
would provide researchers and public health agencies 
with more direct and comprehensive access to the 
specific set of information they need to conduct more 
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robust, focused, and epidemiologically rigorous re-
search on cancer incidence among firefighters. 
(8) Efforts to understand cancer incidence 
among firefighters through a specialized national 
cancer registry will better inform the kinds of pre-
cautions firefighters should take in the future, im-
prove our understanding of key epidemiological 
trends, and potentially lead to the development of 
more sophisticated safety protocols to lower cancer 
risks. 
SEC. 3. PATIENT REGISTRY FOR FIREFIGHTER CANCER IN-
CIDENCE. 
(a) IN GENERAL.—The Secretary of Health and 
Human Services, acting through the Director of the Cen-
ters for Disease Control and Prevention, shall develop and 
maintain a voluntary patient registry to collect data on 
cancer incidence among firefighters. 
(b) USE OF REGISTRY.—The patient registry shall be 
used for the following purposes: 
(1) To establish and improve collection infra-
structure and activities related to the nationwide 
monitoring of the incidence of cancer among fire-
fighters. 
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(2) To collect, consolidate, store, and make 
publicly available epidemiological information related 
to cancer incidence and trends among firefighters. 
(c) RELEVANT DATA.—In carrying out the voluntary 
data collection for purposes of inclusion under the patient 
registry under subsection (a), the Secretary should seek 
to include the following de-identified information: 
(1) With respect to cancer diagnoses and treat-
ment of firefighters, de-identified information on— 
(A) full detailing of physical examinations 
and medical history; 
(B) complete detailing of all relevant diag-
nostic tests and lab procedures; 
(C) complete detailing of all pathology and 
operative reports; and 
(D) complete detailing of treatments un-
dergone or planned. 
(2) With respect to individual patient history 
relating to the incidence of cancer among fire-
fighters, de-identified information on— 
(A) basic demographic information, includ-
ing the age of the firefighter involved and age 
of onset of cancer; 
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(B) a listing of status of the firefighter as 
either volunteer, paid-on-call, or career fire-
fighter; 
(C) the number of years on the job and a 
detailing of additional employment experience 
that was either performed concurrently along-
side firefighting service or anytime thereafter; 
(D)(i) a measure of the number of fire in-
cidents attended as well as the type of fire inci-
dents (such as residential house fire or commer-
cial fire); or 
(ii) in the case of a firefighter who is un-
able to provide information on such number and 
type, an estimate of such number and type 
based on the method developed under sub-
section (d)(2); and 
(E) a list of additional risk factors, includ-
ing smoking or drug use, as determined rel-
evant by the Secretary. 
(3) Any additional information that is deemed 
necessary by the Secretary. 
(d) METHODS.— 
(1) IN GENERAL.—For the purposes described 
in subsection (b), the Secretary is authorized to in-
corporate questions into public health surveys, ques-
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tionnaires, and other databases in existence as of the 
date of enactment of this Act. 
(2) ENSURING
REPRESENTATION
OF
UNDER-
REPRESENTED GROUPS IN REGISTRY.—In carrying 
out this section, the Secretary shall take such meas-
ures as the Secretary deems appropriate to encour-
age the inclusion of data on minority, female, and 
volunteer firefighters in the registry established 
under this section. 
(3) METHOD TO ESTIMATE NUMBER AND TYPE 
OF FIRE INCIDENTS.—For purposes of subsection 
(c)(2)(D), the Secretary, in consultation with the ex-
perts described in subsection (e), shall develop a reli-
able 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 infor-
mation. 
(e) CONSULTATION.—The Secretary shall, on a reg-
ular basis, seek feedback regarding the utility of the reg-
istry established under this section and ways the registry 
can be improved from non-Federal experts in the following 
areas: 
(1) Public health experts with experience in de-
veloping and maintaining cancer registries. 
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