text: SECTION 1. SHORT TITLE.
  
      This Act may be cited as the ``Congenital Heart Futures 
  Reauthorization Act of 2015''.
  
  SEC. 2. NATIONAL CONGENITAL HEART DISEASE SURVEILLANCE SYSTEM.
  
      Section 399V-2 of the Public Health Service Act (42 U.S.C. 280g-13) 
  is amended to read as follows:
  
  ``SEC. 399V-2. NATIONAL CONGENITAL HEART DISEASE RESEARCH, 
                SURVEILLANCE, AND AWARENESS.
  
      ``(a) In General.--The Secretary, acting through the Director of 
  the Centers for Disease Control and Prevention, shall--
              ``(1) enhance and expand research and surveillance 
          infrastructure to study and track the epidemiology of 
          congenital heart disease (in this section referred to as 
          `CHD');
              ``(2) plan and implement a public outreach and education 
          campaign regarding CHD across the lifespan; and
              ``(3) award grants to eligible entities to undertake the 
          activities described in subsections (b) and (c).
      ``(b) National Congenital Heart Disease Cohort Study.--
              ``(1) In general.--The Director of the Centers for Disease 
          Control and Prevention shall plan, develop, implement, and 
          submit one or more reports to the Congress on a cohort study to 
          improve understanding of the epidemiology of CHD across the 
          lifespan, from birth to adulthood, with particular interest in 
          the following:
                      ``(A) Health care utilization and natural history 
                  of those affected by CHD.
                      ``(B) Demographic factors associated with CHD, such 
                  as age, race, ethnicity, gender, and family history of 
                  individuals who are diagnosed with the disease.
                      ``(C) Outcome measures, such that analysis of the 
                  outcome measures will allow derivation of evidence-
                  based best practices and guidelines for CHD patients.
              ``(2) Permissible considerations.--The study under this 
          subsection may--
                      ``(A) gather data on the health outcomes of a 
                  diverse population of those affected by CHD;
                      ``(B) consider health disparities among those 
                  affected by CHD which may include the consideration of 
                  prenatal exposures; and
                      ``(C) incorporate behavioral, emotional, and 
                  educational outcomes of those affected by CHD.
              ``(3) Public access.--Subject to paragraph (4), the data 
          generated from the study under this subsection shall be made 
          available to the public, including CHD researchers.
              ``(4) Patient privacy.--The Secretary shall ensure that the 
          study under this subsection is carried out in a manner that 
          complies with the requirements applicable to a covered entity 
          under the regulations promulgated pursuant to section 264(c) of 
          the Health Insurance Portability and Accountability Act of 
          1996.
      ``(c) Congenital Heart Disease Awareness Campaign.--
              ``(1) In general.--The Director of the Centers for Disease 
          Control and Prevention shall establish and implement an 
          awareness, outreach, and education campaign regarding CHD 
          across the lifespan. The information expressed through such 
          campaign shall--
                      ``(A) emphasize that CHD is the most prevalent 
                  birth defect;
                      ``(B) identify CHD as a condition that affects 
                  those diagnosed throughout their lives; and
                      ``(C) promote the need for pediatric, adolescent, 
                  and adult individuals with CHD to seek and maintain 
                  lifelong, specialized care.
              ``(2) Permissible activities.--The campaign under this 
          subsection may--
                      ``(A) utilize collaborations or partnerships with 
                  other agencies, health care professionals, and patient 
                  advocacy organizations that specialize in the needs of 
                  individuals with CHD; and
                      ``(B) include the use of print, film, and 
                  electronic materials distributed via television, radio, 
                  Internet, and other commercial marketing venues.
      ``(d) Eligibility for Grants.--To be eligible to receive a grant 
  under subsection (a)(3), an entity shall--
              ``(1) be a public or private nonprofit entity with 
          specialized experience in CHD; and
              ``(2) submit to the Secretary an application at such time, 
          in such manner, and containing such information as the 
          Secretary may require.
      ``(e) Authorization of Appropriations.--To carry out this section, 
  there is authorized to be appropriated $4,000,000 for each of fiscal 
  years 2016 through 2020.''.
  
  SEC. 3. CONGENITAL HEART DISEASE RESEARCH.
  
      Section 425 of the Public Health Service Act (42 U.S.C. 285b-8) is 
  amended to read as follows:
  
  ``SEC. 425. CONGENITAL HEART DISEASE.
  
      ``(a) In General.--The Director of the Institute may expand, 
  intensify, and coordinate research and related activities of the 
  Institute with respect to congenital heart disease, which may include 
  congenital heart disease research with respect to--
              ``(1) causation of congenital heart disease, including 
          genetic causes;
              ``(2) long-term outcomes in individuals with congenital 
          heart disease, including infants, children, teenagers, adults, 
          and elderly individuals;
              ``(3) diagnosis, treatment, and prevention;
              ``(4) studies using longitudinal data and retrospective 
          analysis to identify effective treatments and outcomes for 
          individuals with congenital heart disease; and
              ``(5) identifying barriers to lifelong care for individuals 
          with congenital heart disease.
      ``(b) Coordination of Research Activities.--The Director of the 
  Institute may coordinate research efforts related to congenital heart 
  disease among multiple research institutions and may develop research 
  networks.
      ``(c) Minority and Medically Underserved Communities.--In carrying 
  out the activities described in this section, the Director of the 
  Institute shall consider the application of such research and other 
  activities to minority and medically underserved communities.
      ``(d) Report From NIH.--Not later than 1 year after the date of 
  enactment of the Congenital Heart Futures Reauthorization Act of 2015, 
  the Director of NIH, acting through the Director of the Institute, 
  shall provide a report to Congress--
              ``(1) outlining the ongoing research efforts of the 
          National Institutes of Health regarding congenital heart 
          disease; and
              ``(2) identifying--
                      ``(A) future plans for research regarding 
                  congenital heart disease; and
                      ``(B) the areas of greatest need for such 
                  research.''.
target: Congenital Heart Futures Reauthorization Act of 2015 This bill amends the Public Health Service Act to replace the authorization for a National Congenital Heart Disease Surveillance System with a requirement for the Centers for Disease Control and Prevention (CDC), regarding congenital heart disease, to enhance and expand research and surveillance infrastructure, and plan and implement a public outreach and education campaign. (Congenital heart disease is a condition caused by a heart defect that is present at birth.) The CDC must award grants to nonprofit entities to conduct: (1) a cohort study of congenital heart disease, from birth to adulthood, that considers health care utilization, demographic factors, and outcomes; and (2) an awareness, outreach, and education campaign regarding congenital heart disease. The National Heart, Lung, and Blood Institute must report on its ongoing research efforts regarding congenital heart disease, future plans for such research, and areas of greatest need for such research.
feat_title: Congenital Heart Futures Reauthorization Act of 2015