The Secretary, acting through the Director of the Centers for Disease Control and Prevention, may—
(1)enhance and expand infrastructure to track the epidemiology of congenital heart disease and to organize such information into a nationally-representative, population-based surveillance system that compiles data concerning actual occurrences of congenital heart disease, to be known as the “National Congenital Heart Disease Surveillance System”; or
(2)award a grant to one eligible entity to undertake the activities described in paragraph (1).
The purpose of the Congenital Heart Disease Surveillance System shall be to facilitate further research into the types of health services patients use and to identify possible areas for educational outreach and prevention in accordance with standard practices of the Centers for Disease Control and Prevention.
The Congenital Heart Disease Surveillance System—
(1)may include information concerning the incidence and prevalence of congenital heart disease in the United States;
(2)may be used to collect and store data on congenital heart disease, including data concerning—
(A)demographic factors associated with congenital heart disease, such as age, race, ethnicity, sex, and family history of individuals who are diagnosed with the disease;
(B)risk factors associated with the disease;
(C)causation of the disease;
(D)treatment approaches; and
(E)outcome measures, such that analysis of the outcome measures will allow derivation of evidence-based best practices and guidelines for congenital heart disease patients; and
(3)may ensure the collection and analysis of longitudinal data related to individuals of all ages with congenital heart disease, including infants, young children, adolescents, and adults of all ages.
(d) Public access
The Congenital Heart Disease Surveillance System shall be made available to the public, as appropriate, including congenital heart disease researchers.
(e) Patient privacy
The Secretary shall ensure that the Congenital Heart Disease Surveillance System is maintained in a manner that complies with the regulations promulgated under section 264 of the Health Insurance Portability and Accountability Act of 1996.
(f) Eligibility for grant
To be eligible to receive a grant under subsection (a)(2), an entity shall—
(1)be a public or private nonprofit entity with specialized experience in congenital heart disease; and
(2)submit to the Secretary an application at such time, in such manner, and containing such information as the Secretary may require.
Section 264 of the Health Insurance Portability and Accountability Act of 1996, referred to in subsec. (e), is section 264 ofPub. L. 104–191, which is set out as a note under section
1320d–2 of this title.
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