,,ii #aaeth ,,congress #ast ,session ,s4 #chb ,,in ,,the ,,senate ,,of ,,the ,,united ,,states ,february #ae1 #bjag,mr4 ,menendez 7for himself1 ,ms4 ,murkowski1 ,mr4 ,rubio1 ,ms4 ,klobuchar1 ,mr4 ,markey1 ,mr4 ,blumenthal1 ,mr4 ,daines1 ,mr4 ,booker1 ,mr4 ,franken1 ,mr4 ,schumer1 ,mr4 ,mc,cain1 ,mrs4 ,gillibrand1 and ,mr4 ,tester7 introduced the following bill2 which was read twice and referred to the ,committee on ,health1 ,education1 ,labor1 and ,pensions ,a ,,bill ,to require the ,secretary of ,health and ,human ,services to develop a voluntary registry to collect data on cancer incidence among firefighters4 #a4 ,short title ,this ,act may be cited as the ,firefighter ,cancer ,registry ,act of #bjag4 #b4 ,patient registry for firefighter cancer incidence 7a7 ,in general ,the ,secretary of ,health and ,human ,services1 acting through the ,director of the ,centers for ,disease ,control and ,prevention1 shall develop and maintain1 directly or through a grant or cooperative agreement1 a voluntary registry of firefighters 7referred to in this section as the ,firefighter ,registry7 to collect relevant history and occupational information of such firefighters that can be linked to available cancer registry data collected by existing ,state cancer registries4 7b7 ,use of ,firefighter ,registry ,the ,firefighter ,registry shall be used for the following purposes3 7#a7 ,to establish and improve collection infrastructure and activities related to the nationwide monitoring of the incidence of cancer among firefighters4 7#b7 ,to collect1 consolidate1 store1 and make publicly available epidemiological information related to cancer incidence and trends among firefighters4 7c7 ,relevant data 7#a7 ,in general ,in carrying out the voluntary data collection for purposes of inclusion under the ,firefighter ,registry1 the ,secretary should seek to include the following information3 7,a7 ,identifiable information from a representative sample size1 as determined by the ,secretary under subsection 7d77#b77;,a71 of volunteer1 paid-on-call1 and career firefighters1 independent of cancer status or diagnosis4 7,b7 ,with respect to individual risk factors and work history of firefighters1 available information on-- 7i7 basic demographic information1 including the age of the firefighter involved2 7ii7 a listing of status of the firefighter as either volunteer1 paid-on-call1 or career firefighter2 7iii7 the number of years on the job and a detailing of additional employment experience that was either performed concurrently alongside firefighting service1 before1 or anytime thereafter2 7iv7 7,i7 a measure of the number of fire incidents attended as well as the type of fire incidents 7such as residential house fire or commercial fire72 or 7,,ii7 in the case of a firefighter who is unable to provide information on such number and type1 an estimate of such number and type based on the method developed under subsection 7d77#b72 7v7 a list of additional risk factors1 including smoking or drug use1 as determined relevant by the ,secretary2 and 7vi7 ,other physical examination and medical history information relevant to a cancer incidence study or general health of firefighters not available in existing cancer registries4 7,c7 ,any additional information that is deemed necessary by the ,secretary4 7#b7 ,diagnoses and treatment ,in carrying out the data collection for purposes of inclusion under the ,firefighter ,registry1 with respect to diagnoses and treatment of firefighters diagnosed with cancer1 the ,secretary shall enable the ,firefighter ,registry to link to ,state-based cancer registries1 for a purpose described by clause 7vi7 or 7vii7 of section #cii;,b7c77#b77;,d7 of the ,public ,health ,service ,act 7#db ,u4,s4,c4 #bhj;e7c77#b77;,d771 to obtain information on-- 7,a7 administrative information1 including date of diagnoses and source of information2 and 7,b7 pathological data characterizing the cancer1 including cancer site1 state of disease 7pursuant to ,staging ,guide71 incidence1 and type of treatment4 7d7 ,methods 7#a7 ,in general ,for the purposes described in subsection 7b71 the ,secretary is authorized to incorporate questions into public health surveys1 questionnaires1 and other databases4 7#b7 ,required strategy ,the ,secretary shall develop a strategy1 working in consultation with the stakeholders identified in subsection 7e71 to maximize participation in the ,firefighter ,registry established under this ,act4 ,at minimum1 the strategy shall include the following3 7,a7 ,identified minimum participation targets for volunteer1 paid-on-call1 and career firefighters4 7,b7 ,a strategy for increasing awareness of the ,firefighter ,registry and maximizing participation among volunteer1 paid-on-call1 and career firefighters to meet minimum participation targets4 7,c7 ,additional steps that may be required to ensure the equitable representation of groups identified in paragraph 7#e74 7,d7 ,information on how the ,secretary will store data described in subsection 7c77#a7 and provide links to relevant health information described in subsection 7c77#b74 7,e7 ,working in consultation with the experts described in subsection 7e71 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 information4 7#c7 ,report to ,congress ,the ,secretary shall submit the strategy described in paragraph 7#b7 to the ,committee on ,energy and ,commerce of the ,house of ,representatives and the ,committee on ,health1 ,education1 ,labor1 and ,pensions of the ,senate not later than #cj days after the date of the completion of the strategy4 7#d7 ,guidance for inclusion and maintenance of data on firefighters ,the ,secretary shall develop1 in consultation with the stakeholders identified in subsection 7e71 and disseminate guidance to ,state health agencies1 ,state departments of homeland security1 and volunteer1 paid-on-call1 combination1 and career firefighting agencies that outlines the following3 7,a7 ,how new information about firefighters will be submitted to the ,firefighter ,registry for inclusion4 7,b7 ,how information about firefighters will be maintained and updated in the ,firefighter ,registry over time4 7,c7 ,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 information4 7,d7 ,further information1 as deemed necessary by the ,secretary4 7#e7 ,ensuring representation of underrepresented groups in registry ,in carrying out this section1 the ,secretary shall take such measures as the ,secretary deems appropriate to encourage the inclusion of data on minority1 female1 and volunteer firefighters in the ,firefighter ,registry established under this section4 7e7 ,consultation ,the ,secretary shall1 on a regular basis1 seek feedback regarding the utility of the ,firefighter ,registry established under this section and ways the ,firefighter ,registry can be improved from non-,federal experts in the following areas3 7#a7 ,public health experts with experience in developing and maintaining cancer registries4 7#b7 ,epidemiologists with experience in studying cancer incidence4 7#c7 ,clinicians with experience in diagnosing and treating cancer incidence4 7#d7 ,active and retired volunteer1 paid-on-call1 and career firefighters as well as relevant national fire and emergency response organizations4 7f7 ,research availability ,the ,secretary shall develop and make public a process for de-identifying data from the ,firefighter ,registry and making such data available without a fee for research or other purposes4 ,such process shall provide that such data shall be made available for such research purposes only if there is an agreement to make findings1 journal articles1 or other print or web-based publications derived from such research public or available to the relevant stakeholders identified in subsection 7e74 7g7 ,privacy ,in carrying out this ,act1 the ,secretary shall apply to the ,firefighter ,registry developed under subsection 7a7 data security provisions and privacy standards that comply with the best practices of the ,centers for ,disease ,control and ,prevention and provide for data privacy and security standards similar to those in the ,,hipaa privacy regulation1 as defined in section #aahj7;b77#c7 of the ,social ,security ,act 7#db ,u4,s4,c4 #acbj;d-#i7;b77#c774 7h7 ,authorization of funds ,to carry out this section1 there are authorized to be appropriated #b1ejj1jjj for each of the fiscal years #bjah through #bjbb4