‘‘SEC. 399V–7. 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 mesothe-
lioma 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 preva-
lence of mesothelioma in the United States; 
‘‘(4) to facilitate further research on mesothe-
lioma; 
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‘‘(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 re-
search on, and prevention and treatment of, meso-
thelioma. 
‘‘(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 in-
formation on mesothelioma, such as information con-
cerning— 
‘‘(A) demographics and other information 
associated or possibly associated with mesothe-
lioma, such as age, race, ethnicity, sex, geo-
graphic location, and family history; 
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‘‘(B) risk factors associated or possibly as-
sociated 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 meas-
ures. 
‘‘(d) CONSULTATION.—In carrying out this section, 
the Secretary shall consult with individuals with appro-
priate expertise, including non-Federal mesothelioma ex-
perts including— 
‘‘(1) epidemiologists with experience in disease 
surveillance or registries; 
‘‘(2) representatives of national voluntary asso-
ciations that focus on mesothelioma or have dem-
onstrated experience in research, care, or patient 
service for mesothelioma; 
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‘‘(3) health information technology experts or 
other information management specialists; 
‘‘(4) clinicians with expertise in mesothelioma; 
and 
‘‘(5) research scientists with experience con-
ducting translational research or utilizing surveil-
lance systems for scientific research purposes. 
‘‘(e) COORDINATION WITH OTHER FEDERAL AGEN-
CIES.—The Secretary shall make information in and anal-
ysis 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 appro-
priate, to the public, including researchers. 
‘‘(g) PRIVACY.—The Secretary shall ensure that pri-
vacy 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 secu-
rity law (as defined in section 3009). 
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‘‘(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 
2021, 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 re-
vision of such registry; and 
‘‘(iii) the scope of such registry; and 
‘‘(B) may include a description of the ac-
tivities 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 
2021, the Secretary shall submit a report to the 
Congress concerning the implementation of this sec-
tion. Such report should include information on— 
‘‘(A) the development and maintenance of 
the mesothelioma patient registry under sub-
section (a); 
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‘‘(B) the type of information collected and 
stored in the registry; 
‘‘(C) the use and availability of such infor-
mation, including guidelines for such use; and 
‘‘(D) the use and coordination of databases 
that collect or maintain information on meso-
thelioma.’’. 
Æ 
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