(a)Report on CDC national cardiomyopathy activities
(1)In general
Not later than 18 months after December 23, 2024, the Secretary, acting through the Director of the Centers for Disease Control and Prevention, shall submit to Congress a report on findings generated from existing activities conducted by the Centers for Disease Control and Prevention to improve the understanding of the prevalence and epidemiology of cardiomyopathy across the lifespan, from birth to adulthood, with particular interest in the following:
(A)The natural history of individuals with cardiomyopathy, in both the pediatric and adult population.
(B)Estimates of cardiomyopathy-related emergency department visits and hospitalizations, in both the pediatric and adult population.
(2)Public access
Subject to paragraph
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(a) Report on CDC national cardiomyopathy activities
(1) In general
Not later than 18 months after December 23, 2024, the Secretary, acting through the Director of the Centers for Disease Control and Prevention, shall submit to Congress a report on findings generated from existing activities conducted by the Centers for Disease Control and Prevention to improve the understanding of the prevalence and epidemiology of cardiomyopathy across the lifespan, from birth to adulthood, with particular interest in the following:
(A) The natural history of individuals with cardiomyopathy, in both the pediatric and adult population.
(B) Estimates of cardiomyopathy-related emergency department visits and hospitalizations, in both the pediatric and adult population.
(2) Public access
Subject to paragraph (3), the report submitted under this subsection shall be made available to the public.
(3) Privacy protections
The Secretary shall ensure that this subsection is carried out in a manner that complies with all applicable privacy laws under Federal and State law.
(b) Improving risk assessments for individuals with cardiomyopathy
(1) In general
The Secretary shall develop and make publicly available a cardiomyopathy risk assessment for health care providers and individuals. Such risk assessment shall, at a minimum, include the following:
(A) Background information on the prevalence, incidence, and health impact of cardiomyopathy, including all forms of cardiomyopathy and their effects on pediatric, adolescent, and adult individuals.
(B) A worksheet with variables and conditions for an individual or health care provider to use in assessing whether an individual is at risk for cardiomyopathy.
(C) A worksheet with variables and stages of progression for an individual or health care provider to use in assessing whether and to what extent cardiomyopathy has progressed in an individual.
(D) Guidelines on cardiomyopathy screenings for individuals who are at risk for, or have a family history of, cardiomyopathy.
(2) Stakeholder input
In carrying out paragraph (1), the Director of the Centers for Disease Control and Prevention shall seek input from external stakeholders including—
(A) representatives from national patient advocacy organizations expert in all forms of cardiomyopathy;
(B) representatives from medical professional societies that specialize in the care of adults and pediatrics with cardiomyopathy; and
(C) representatives from other relevant Federal agencies.
(c) Definition
In this section, the term "cardiomyopathy" has the meaning given to such term in section
244a of this title.