View all text of Part M [§ 280e - § 280e-5]
§ 280e–5. Voluntary registry for firefighter cancer incidence
(a) In general
(b) Use of Firefighter RegistryThe Firefighter Registry may be used for the following purposes:
(1) To improve data collection and data coordination activities related to the nationwide monitoring of the incidence of cancer among firefighters.
(2) To collect, consolidate, and maintain, consistent with subsection (g), epidemiological information and analyses related to cancer incidence and trends among firefighters 1
1 So in original. Probably should be followed by a period.
(c) Relevant data
(1) Data collectionIn carrying out the voluntary data collection for purposes of inclusion under the Firefighter Registry, the Secretary may collect the following:
(A) Information, as determined by the Secretary under subsection (d)(1), of volunteer, paid-on-call, and career firefighters, independent of cancer status or diagnosis.
(B) Individual risk factors and occupational history of firefighters.
(C) Information, if available, related to—
(i) basic demographic information, including—(I) the age of the firefighter involved during the relevant dates of occupation as a firefighter; and(II) the age of cancer diagnosis;
(ii) the status of the firefighter as either volunteer, paid-on-call, or career firefighter;
(iii) the total number of years of occupation as a firefighter and a detailing of additional employment experience, whether concurrent, before, or anytime thereafter;
(iv)(I) the approximate number of fire incidents attended, including information related to the type of fire incidents and the role of the firefighter in responding to the incident; or(II) in the case of a firefighter for whom information on such number and type is unavailable, an estimate of such number and type based on the method developed under subsection (d)(1)(D); and
(v) other medical information and health history, including additional risk factors, as appropriate, and other information relevant to a cancer incidence study of firefighters.
(2) Information on diagnoses and treatmentIn carrying out paragraph (1), with respect to diagnoses and treatment of firefighters with cancer, the Secretary shall, as appropriate, enable the Firefighter Registry to electronically connect to State-based cancer registries, for a purpose described by clause (vi) or (vii) of section 280e(c)(2)(D) of this title, to obtain—
(A) date of diagnoses and source of information; and
(B) pathological data characterizing the cancer, including cancer site, state of disease (pursuant to Staging Guide), incidence, and type of treatment.
(d) Firefighter Registry coordination strategy
(1) Required strategy
(A) Increasing awareness of the Firefighter Registry and encouraging participation among volunteer, paid-on-call, and career firefighters.
(B) 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.
(C) Information on how the Secretary will store data described in subsection (c)(1) and provide electronic access to relevant health information described in subsection (c)(2).
(D) Working in consultation with the experts described in subsection (e), 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.
(2) Report to Congress
(3) Guidance for inclusion and maintenance of data on firefightersThe Secretary shall develop, in consultation with the stakeholders identified in subsection (e), State health agencies, State departments of homeland security, and volunteer, paid-on-call, combination, and career firefighting agencies, a strategy for inclusion of firefighters in the registry that are representative of the general population of firefighters, that outlines the following:
(A) How new information about firefighters will be submitted to the Firefighter Registry for inclusion.
(B) How information about firefighters will be maintained and updated in the Firefighter Registry over time.
(C) 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 firefighter is unable to provide such information.
(D) Further information, as deemed necessary by the Secretary.
(e) Consultation and reportThe Secretary shall consult with non-Federal experts on the Firefighter Registry established under this section, and shall submit to the Committee on Health, Education, Labor, and Pensions of the Senate and the Committee on Energy and Commerce of the House of Representatives a report that includes, as appropriate, information on goals achieved and improvements needed to strengthen the Firefighter Registry. Such non-Federal experts shall include the following:
(1) Public health experts with experience in developing and maintaining cancer registries.
(2) Epidemiologists with experience in studying cancer incidence.
(3) Clinicians with experience in diagnosing and treating cancer incidence.
(4) Active and retired volunteer, paid-on-call, and career firefighters as well as relevant national fire and emergency response organizations.
(f) Research availability
(g) Privacy
(h) Authorization of funds
(Pub. L. 115–194, § 2, July 7, 2018, 132 Stat. 1506.)