‘‘(b) IMPROVING RISK ASSESSMENTS FOR INDIVID-
UALS WITH CARDIOMYOPATHY.— 
‘‘(1) IN
GENERAL.—The Secretary, acting 
through the Director of the Centers for Disease 
Control and Prevention, shall develop and make pub-
licly available a risk assessment for individuals with 
or at risk for cardiomyopathy. Such risk assessment 
shall, at a minimum, include the following: 
‘‘(A) Background information of the preva-
lence, incidence, and health impact of cardio-
myopathy, including all forms of cardio-
myopathy and their effects on pediatric, adoles-
cent, and adult individuals. 
‘‘(B) A worksheet with variables and con-
ditions for an individual or health care provider 
to use in assessing whether the 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 
the individual. 
‘‘(D) 
Guidelines 
on 
cardiomyopathy 
screenings for individuals who are at risk for, 
or have a family history of, cardiomyopathy. 
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‘‘(2) STAKEHOLDER
INPUT.—In carrying out 
paragraph (1), the Director of the Centers for Dis-
ease 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 profes-
sional societies that specialize in the care of 
adults and pediatrics with cardiomyopathy; and 
‘‘(C) representatives from other relevant 
Federal agencies. 
‘‘(c) CARDIOMYOPATHY DEFINED.—For purposes of 
this section, the term ‘cardiomyopathy’ means a heart dis-
ease that affects the heart’s muscle (myocardium)— 
‘‘(1) the symptoms of which may vary from 
case to case, including— 
‘‘(A) cases in which no symptoms are 
present (asymptomatic); and 
‘‘(B) cases in which there are symptoms of 
a progressive condition that may result from an 
impaired ability of the heart to pump blood, 
such as fatigue, irregular heartbeats (arrhyth-
mia), heart failure, and, potentially, sudden car-
diac death; and 
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‘‘(2) the recognized types of which include di-
lated, hypertrophic, restrictive, arrhythmogenic right 
ventricular dysplasia, and left ventricular non-com-
paction.’’. 
(b) FEDERAL WORKING GROUP.— 
(1) IN
GENERAL.—Not later than one year 
after the date of the enactment of this Act, the Sec-
retary of Health and Human Services shall convene 
an interdisciplinary working group for the purpose 
of expanding cardiomyopathy research. 
(2) DUTIES.—The working group shall— 
(A) develop a research strategy to address 
the gaps in knowledge on the molecular and ge-
netic causes of cardiomyopathy in children; 
(B) identify approaches that could result 
in the development of preventive and disease-di-
rected therapies specific to pediatric cardiomy-
opathies and heart failure; and 
(C) explore novel clinical trial methodolo-
gies and end points in an effort to optimize suc-
cessful completion of clinical trials in this rare 
patient population. 
(3) MEMBERSHIP.—The Secretary shall appoint 
to the working group members representing a range 
of stakeholders outside of the Federal Government 
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with subject matter expertise relating to cardio-
myopathy, including— 
(A) pediatric cardiologists with expertise in 
the diagnosis and treatment of children with 
cardiomyopathies and heart failure and clinical 
trials related to the pediatric population; 
(B) geneticists with expertise in pediatric 
cardiomyopathy and heart failure; 
(C) cardiovascular molecular biologists; 
(D) pharmacologists; 
(E) research scientists with expertise in 
cardiomyopathy and heart failure; and 
(F) other stakeholders with relevant exper-
tise, as determined by the Secretary. 
(4) REPORT TO CONGRESS.—Not later than 2 
years after the date of the enactment of this Act, the 
Working Group shall publish and submit to Con-
gress a report that contains— 
(A) a description of the activities of the 
working group; 
(B) the findings and recommendations of 
the working group with respect to each of the 
topics described in paragraph (2); and 
(C) the recommendations of the working 
group relating to actions that Federal agencies 
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and Congress can take to implement the rec-
ommendations described in subparagraph (B). 
(5) NO
COMPENSATION.—A member of the 
working group shall serve without compensation. 
(6) TERMINATION.—The working group shall 
terminate on the date on which the working group 
submits the report under paragraph (4). 
(7) CARDIOMYOPATHY
DEFINED.—For pur-
poses of this subsection, the term ‘‘cardiomyopathy’’ 
means a heart disease that affects the heart’s muscle 
(myocardium)— 
(A) the symptoms of which may vary from 
case to case, including— 
(i) cases in which no symptoms are 
present (asymptomatic); and 
(ii) cases in which there are symptoms 
of a progressive condition that may result 
from an impaired ability of the heart to 
pump blood, such as fatigue, irregular 
heartbeats (arrhythmia), heart failure, 
and, potentially, sudden cardiac death; and 
(B) the recognized types of which include 
dilated, hypertrophic, restrictive, arrhythmogen-
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ic right ventricular dysplasia, and left ventric-
ular non-compaction. 
Æ 
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