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42 U.S.C. § 244c — Cardiomyopathy research

Federal law — U.S. Code and appendices · legal_authorities

42 U.S.C. § 244c — Cardiomyopathy research

**(a) In general** The Secretary, in consultation with the Director of the National Institutes of Health, may expand and coordinate research and related activities of the National Institutes of Health with respect to cardiomyopathy, which may include research with respect to— (1) causation of cardiomyopathy, including genetic causes and molecular biomarkers; (2) long-term health outcomes in individuals with cardiomyopathy, including infants, children, teenagers, adults, and elderly individuals; and (3) studies using longitudinal data and retrospective analysis to identify effective treatments and outcomes for individuals with cardiomyopathy. **(b) Nonduplication** The Secretary shall ensure that any research and activities related to cardiomyopathy under this section do not unnecessarily duplicate activities, programs, or efforts of other agencies and offices within the Department of Health and Human Services. **(c) NIH report** Not later than 18 months after December 23, 2024, the Secretary, in consultation with the Director of the National Institutes of Health, shall submit to Congress a report— (1) outlining the ongoing research efforts of the National Institutes of Health regarding cardiomyopathy; and (2) identifying— (A) a research agenda regarding adult forms of cardiomyopathy; (B) plans for researching cardiomyopathy affecting the pediatric population; and (C) the areas of greatest need for such research. **(d) Cardiomyopathy defined** In this section, the term “cardiomyopathy” has the meaning given to such term in [section 244a of this title](https://uscode.house.gov/view.xhtml?req=granuleid:USC-prelim-title42-section244a&num=0&edition=prelim).

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Source location: Title 42, Chapter 6A, § 244c; chapter-6a-public-health-service.md

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Federal law — U.S. Code and appendices · legal_authorities

42 U.S.C. § 244a — Materials and resources to increase education and awareness of cardiomyopathy among school administrators, educators, and families

**(a) Materials and resources** Not later than 18 months after December 23, 2024, the Secretary, in consultation with the Director of the Centers for Disease Control and Prevention, shall develop public education materials and resources to be disseminated to school administrators, educators, school health professionals, coaches, families, guardians, caregivers, and other appropriate individuals. The materials and resources shall include— (1) information on the signs, symptoms, and risk factors associated with high-risk cardiac conditions and genetic heart rhythm abnormalities that may cause sudden cardiac arrest in children, adolescents, and young adults, including— (A) cardiomyopathy; (B) long QT syndrome, Brugada syndrome, catecholaminergic polymorphic ventricular tachycardia, short QT syndrome, and Wolff-Parkinson-White syndrome; and (C) other high-risk cardiac conditions, as determined by the Secretary; (2) guidelines regarding the placement of automated external defibrillators in schools, early childhood education programs, and child care centers; (3) training information on automated external defibrillators and cardiopulmonary resuscitation; and (4) recommendations for how schools, early childhood education programs, and child care centers can develop and implement a cardiac emergency response plan. **(b) Dissemination of materials and resources** Not later than 30 months after December 23, 2024, the Secretary shall disseminate the materials and resources developed under subsection (a) in accordance with the following: (1) **Distribution by State educational agencies** — The Secretary shall make available such materials and resources to State educational agencies to distribute— (A) to school administrators, educators, school health professionals,

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Federal law — U.S. Code and appendices · legal_authorities

42 U.S.C. § 244c — Cardiomyopathy research

Page 170 TITLE 42—THE PUBLIC HEALTH AND WELFARE § 244c (3) Privacy protections The Secretary shall ensure that this sub- section is carried out in a manner that com- plies 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 pub- licly available a cardiomyopathy risk assess- ment for health care providers and individ- uals. Such risk assessment shall, at a min- imum, include the following: (A) Background information on the preva- lence, incidence, and health impact of car- diomyopathy, including all forms of cardio- myopathy and their effects on pediatric, ad- olescent, and adult individuals. (B) A worksheet with variables and condi- tions for an individual or health care pro- vider to use in assessing whether an indi- vidual 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 pro- gressed in an individual. (D) Guidelines on cardiomyopathy screenings for individuals who are at risk for, or have a family history of, cardio- myopathy. (2) Stakeholder input In carrying out paragraph (1), the Director of the Centers for Disease Control and Preven- tion shall seek input from external stake- holders including— (A) representatives from national patient advocacy organizations expert in all forms of cardiomyopathy; (B) representatives from medical profes- sional 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

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