,i #aafth ,,congress #ast ,session ,h4 ,r4 #ahbd ,,in ,,the ,,house ,,of ,,representatives ,march #ah1 #bjai,mr4 ,katko 7for himself and ,mr4 ,kennedy7 introduced the following bill2 which was referred to the ,committee on ,energy and ,commerce ,a ,,bill ,to amend the ,public ,health ,service ,act to provide for the establishment of a mesothelioma patient registry1 and for other purposes4 #a4 ,short title ,this ,act may be cited as the ,mary ,jo ,lawyer ,spano ,mesothelioma ,patient ,registry ,act of #bjai4 #b4 ,patient registry for mesothelioma data collection and research ,title ,,iii of the ,public ,health ,service ,act is amended by inserting after section #cii,v-#f of such ,act 7#db ,u4,s4,c4 #bhj;g-#ag7 the following3 #cii,v-#g4 ,patient registry for mesothelioma data collection and research 7a7 ,in general ,the ,secretary1 acting through the ,administrator of the ,agency for ,toxic ,substances and ,disease ,registry1 shall develop a patient registry to collect data on mesothelioma1 including information with respect to the incidence and prevalence of the disease in the ,united ,states4 7b7 ,uses ,the ,secretary shall use the registry under subsection 7a7-- 7#a7 to enhance and expand infrastructure and activities for tracking the epidemiology of mesothelioma patients2 7#b7 to collect1 consolidate1 and report on health information on patients who have been diagnosed with mesothelioma1 including with respect to-- 7,a7 treatment outcomes1 including patient longevity2 and 7,b7 the number of patients receiving treatment for mesothelioma disaggregated by hospital2 7#c7 to better describe the incidence and prevalence of mesothelioma in the ,united ,states2 7#d7 to facilitate further research on mesothelioma2 7#e7 to examine factors1 such as environmental and occupational factors1 that may be associated with mesothelioma2 7#f7 to better outline key demographic factors 7such as age1 race or ethnicity1 gender1 and family history7 associated with mesothelioma2 and 7#g7 to make the information in such registry1 other than individually identifiable information1 available to the public to facilitate and enhance research on1 and prevention and treatment of1 mesothelioma4 7c7 ,content ,in carrying out this section1 the ,secretary-- 7#a7 shall provide for the collection and storage of information on the incidence and prevalence of mesothelioma in the ,united ,states2 7#b7 when scientifically possible1 shall provide for the collection and storage of other available information on mesothelioma1 such as information concerning-- 7,a7 demographics and other information associated or possibly associated with mesothelioma1 such as age1 race1 ethnicity1 sex1 geographic location1 and family history2 7,b7 risk factors associated or possibly associated with mesothelioma1 including genetic and environmental risk factors2 and 7,c7 diagnosis and progression markers2 and 7#c7 may provide for the collection and storage of information relevant to analysis on mesothelioma1 such as information concerning-- 7,a7 the epidemiology of the disease2 7,b7 the natural history of the disease2 7,c7 the prevention of the disease2 7,d7 the detection1 management1 and treatment approaches for the disease2 and 7,e7 the development of outcomes measures4 7d7 ,consultation ,in carrying out this section1 the ,secretary shall consult with individuals with appropriate expertise1 including non-,federal mesothelioma experts including-- 7#a7 epidemiologists with experience in disease surveillance or registries2 7#b7 representatives of national voluntary associations that focus on mesothelioma or have demonstrated experience in research1 care1 or patient service for mesothelioma2 7#c7 health information technology experts or other information management specialists2 7#d7 clinicians with expertise in mesothelioma2 and 7#e7 research scientists with experience conducting translational research or utilizing surveillance systems for scientific research purposes4 7e7 ,coordination with other ,federal agencies ,the ,secretary shall make information in and analysis derived from the registry under this section available1 as appropriate1 to ,federal departments and agencies1 such as the ,national ,institutes of ,health1 the ,food and ,drug ,administration1 the ,centers for ,medicare ,medicaid ,services1 the ,agency for ,healthcare ,research and ,quality1 the ,department of ,veterans ,affairs1 and the ,department of ,defense4 7f7 ,public ,access ,subject to subsection 7g71 the ,secretary shall make information in1 and analysis derived from1 the registry under this section available1 as appropriate1 to the public1 including researchers4 7g7 ,privacy ,the ,secretary shall ensure that privacy and security protections applicable to the registry under this section are at least as stringent as the privacy and security protections under ,,hipaa privacy and security law 7as defined in section #cjji74 7h7 ,reports to ,congress 7#a7 ,initial report ,not later than #ah months after the date of enactment of the ,mary ,jo ,lawyer ,spano ,mesothelioma ,patient ,registry ,act of #bjai1 the ,secretary shall submit to the ,congress a report that-- 7,a7 shall outline-- 7i7 the findings in the mesothelioma patient registry under subsection 7a72 7ii7 future plans for expansion or revision of such registry2 and 7iii7 the scope of such registry2 and 7,b7 may include a description of the activities undertaken by the ,secretary to establish partnerships with research and patient advocacy communities to expand such registry4 7#b7 ,subsequent report ,not later than #d years after the date of enactment of the ,mary ,jo ,lawyer ,spano ,mesothelioma ,patient ,registry ,act of #bjai1 the ,secretary shall submit a report to the ,congress concerning the implementation of this section4 ,such report should include information on-- 7,a7 the development and maintenance of the mesothelioma patient registry under subsection 7a72 7,b7 the type of information collected and stored in the registry2 7,c7 the use and availability of such information1 including guidelines for such use2 and 7,d7 the use and coordination of databases that collect or maintain information on mesothelioma4 4