text: SECTION 1. SHORT TITLE.
  
      This Act may be cited as the ``Mary Jo Lawyer Spano Mesothelioma 
  Patient Registry Act of 2015''.
  
  SEC. 2. PATIENT REGISTRY FOR MESOTHELIOMA DATA COLLECTION AND RESEARCH.
  
      Title III of the Public Health Service Act is amended by inserting 
  after section 399V-5 of such Act (42 U.S.C. 280g-16) the following:
  
  ``SEC. 399V-6. PATIENT REGISTRY FOR MESOTHELIOMA DATA COLLECTION AND 
                RESEARCH.
  
      ``(a) In General.--The Secretary, acting through the Administrator 
  of the Agency for Toxic Substances and Disease Registry, shall develop 
  a patient registry to collect data on mesothelioma, including 
  information with respect to the incidence and prevalence of the disease 
  in the United States.
      ``(b) Uses.--The Secretary shall use the registry under subsection 
  (a)--
              ``(1) to enhance and expand infrastructure and activities 
          for tracking the epidemiology of mesothelioma patients;
              ``(2) to collect, consolidate, and report on health 
          information on patients who have been diagnosed with 
          mesothelioma, including with respect to--
                      ``(A) treatment outcomes, including patient 
                  longevity; and
                      ``(B) the number of patients receiving treatment 
                  for mesothelioma disaggregated by hospital;
              ``(3) to better describe the incidence and prevalence of 
          mesothelioma in the United States;
              ``(4) to facilitate further research on mesothelioma;
              ``(5) to examine factors, such as environmental and 
          occupational factors, that may be associated with mesothelioma;
              ``(6) to better outline key demographic factors (such as 
          age, race or ethnicity, gender, and family history) associated 
          with mesothelioma; and
              ``(7) to make the information in such registry, other than 
          individually identifiable information, available to the public 
          to facilitate and enhance research on, and prevention and 
          treatment of, mesothelioma.
      ``(c) Content.--In carrying out this section, the Secretary--
              ``(1) shall provide for the collection and storage of 
          information on the incidence and prevalence of mesothelioma in 
          the United States;
              ``(2) when scientifically possible, shall provide for the 
          collection and storage of other available information on 
          mesothelioma, such as information concerning--
                      ``(A) demographics and other information associated 
                  or possibly associated with mesothelioma, such as age, 
                  race, ethnicity, sex, geographic location, and family 
                  history;
                      ``(B) risk factors associated or possibly 
                  associated with mesothelioma, including genetic and 
                  environmental risk factors; and
                      ``(C) diagnosis and progression markers; and
              ``(3) may provide for the collection and storage of 
          information relevant to analysis on mesothelioma, such as 
          information concerning--
                      ``(A) the epidemiology of the disease;
                      ``(B) the natural history of the disease;
                      ``(C) the prevention of the disease;
                      ``(D) the detection, management, and treatment 
                  approaches for the disease; and
                      ``(E) the development of outcomes measures.
      ``(d) Consultation.--In carrying out this section, the Secretary 
  shall consult with individuals with appropriate expertise, including 
  non-Federal mesothelioma experts including--
              ``(1) epidemiologists with experience in disease 
          surveillance or registries;
              ``(2) representatives of national voluntary associations 
          that focus on mesothelioma or have demonstrated experience in 
          research, care, or patient service for mesothelioma;
              ``(3) health information technology experts or other 
          information management specialists;
              ``(4) clinicians with expertise in mesothelioma; and
              ``(5) research scientists with experience conducting 
          translational research or utilizing surveillance systems for 
          scientific research purposes.
      ``(e) Coordination With Other Federal Agencies.--The Secretary 
  shall make information in and analysis derived from the registry under 
  this section available, as appropriate, to Federal departments and 
  agencies, such as the National Institutes of Health, the Food and Drug 
  Administration, the Centers for Medicare & Medicaid Services, the 
  Agency for Healthcare Research and Quality, the Department of Veterans 
  Affairs, and the Department of Defense.
      ``(f) Public Access.--Subject to subsection (g), the Secretary 
  shall make information in, and analysis derived from, the registry 
  under this section available, as appropriate, to the public, including 
  researchers.
      ``(g) 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 (as defined in section 3009).
      ``(h) Reports to Congress.--
              ``(1) Initial report.--Not later than 18 months after the 
          date of enactment of the Mary Jo Lawyer Spano Mesothelioma 
          Patient Registry Act of 2015, the Secretary shall submit to the 
          Congress a report that--
                      ``(A) shall outline--
                              ``(i) the findings in the mesothelioma 
                          patient registry under subsection (a);
                              ``(ii) future plans for expansion or 
                          revision of such registry; and
                              ``(iii) the scope of such registry; and
                      ``(B) may include a description of the activities 
                  undertaken by the Secretary to establish partnerships 
                  with research and patient advocacy communities to 
                  expand such registry.
              ``(2) Subsequent report.--Not later than 4 years after the 
          date of enactment of the Mary Jo Lawyer Spano Mesothelioma 
          Patient Registry Act of 2015, the Secretary shall submit a 
          report to the Congress concerning the implementation of this 
          section. Such report should include information on--
                      ``(A) the development and maintenance of the 
                  mesothelioma patient registry under subsection (a);
                      ``(B) the type of information collected and stored 
                  in the registry;
                      ``(C) the use and availability of such information, 
                  including guidelines for such use; and
                      ``(D) the use and coordination of databases that 
                  collect or maintain information on mesothelioma.''.
target: Mary Jo Lawyer Spano Mesothelioma Patient Registry Act of 2015 This bill amends the Public Health Service Act to direct the Agency for Toxic Substances and Disease Registry to develop a patient registry to collect data on mesothelioma. The Agency shall use the registry to:   enhance and expand infrastructure and activities for tracking the epidemiology of mesothelioma patients;   collect, consolidate, and report on health information on mesothelioma patients;   describe the incidence and prevalence of mesothelioma in the United States;   facilitate research on mesothelioma;   examine factors that may be associated with mesothelioma;  outline key demographic factors associated with mesothelioma; and   make information available to the public to facilitate and enhance research on, and the prevention and treatment of, mesothelioma.  The Agency: (1) shall provide for the collection and storage of information on the incidence and prevalence of mesothelioma in the United States and information concerning demographics and other information associated with mesothelioma, such as geographic location and family history, risk factors, and diagnosis and progression markers; (2) may provide for the collection and storage of information relevant to analysis on mesothelioma, such as information concerning the epidemiology, natural history, and prevention of the disease, the detection, management, and treatment approaches for the disease, and the development of outcomes measures; and (3) shall make registry information available to federal agencies and the public. 
feat_title: Mary Jo Lawyer Spano Mesothelioma Patient Registry Act of 2015