,i #aadth ,,congress #ast ,session ,h4 ,r4 #cieb ,,in ,,the ,,house ,,of ,,representatives ,november #e1 #bjae ,mr4 ,bilirakis 7for himself1 ,mr4 ,schiff1 and ,ms4 ,norton7 introduced the following bill2 which was referred to the ,committee on ,energy and ,commerce ,a ,,bill ,to amend the ,public ,health ,service ,act to coordinate ,federal congenital heart disease research efforts and to improve public education and awareness of congenital heart disease1 and for other purposes4 #a4 ,short title ,this ,act may be cited as the ,congenital ,heart ,futures ,reauthorization ,act of #bjae4 #b4 ,national congenital heart disease surveillance system ,section #cii,v-#b of the ,public ,health ,service ,act 7#db ,u4,s4,c4 #bhj;g-#ac7 is amended to read as follows3 #cii,v-#b4 ,national congenital heart disease research1 surveillance1 and awareness 7a7 ,in general ,the ,secretary1 acting through the ,director of the ,centers for ,disease ,control and ,prevention1 shall-- 7#a7 enhance and expand research and surveillance infrastructure to study and track the epidemiology of congenital heart disease 7in this section referred to as ,,chd72 7#b7 plan and implement a public outreach and education campaign regarding ,,chd across the lifespan2 and 7#c7 award grants to eligible entities to undertake the activities described in subsections 7b7 and 7c74 7b7 ,national congenital heart disease cohort study 7#a7 ,in general ,the ,director of the ,centers for ,disease ,control and ,prevention shall plan1 develop1 implement1 and submit one or more reports to the ,congress on a cohort study to improve understanding of the epidemiology of ,,chd across the lifespan1 from birth to adulthood1 with particular interest in the following3 7,a7 ,health care utilization and natural history of those affected by ,,chd4 7,b7 ,demographic factors associated with ,,chd1 such as age1 race1 ethnicity1 gender1 and family history of individuals who are diagnosed with the disease4 7,c7 ,outcome measures1 such that analysis of the outcome measures will allow derivation of evidence-based best practices and guidelines for ,,chd patients4 7#b7 ,permissible considerations ,the study under this subsection may-- 7,a7 gather data on the health outcomes of a diverse population of those affected by ,,chd2 7,b7 consider health disparities among those affected by ,,chd which may include the consideration of prenatal exposures2 and 7,c7 incorporate behavioral1 emotional1 and educational outcomes of those affected by ,,chd4 7#c7 ,public access ,subject to paragraph 7#d71 the data generated from the study under this subsection shall be made available to the public1 including ,,chd researchers4 7#d7 ,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 #bfd7;c7 of the ,health ,insurance ,portability and ,accountability ,act of #aiif4 7c7 ,congenital heart disease awareness campaign 7#a7 ,in general ,the ,director of the ,centers for ,disease ,control and ,prevention shall establish and implement an awareness1 outreach1 and education campaign regarding ,,chd across the lifespan4 ,the information expressed through such campaign shall-- 7,a7 emphasize that ,,chd is the most prevalent birth defect2 7,b7 identify ,,chd as a condition that affects those diagnosed throughout their lives2 and 7,c7 promote the need for pediatric1 adolescent1 and adult individuals with ,,chd to seek and maintain lifelong1 specialized care4 7#b7 ,permissible activities ,the campaign under this subsection may-- 7,a7 utilize collaborations or partnerships with other agencies1 health care professionals1 and patient advocacy organizations that specialize in the needs of individuals with ,,chd2 and 7,b7 include the use of print1 film1 and electronic materials distributed via television1 radio1 ,internet1 and other commercial marketing venues4 7d7 ,eligibility for grants ,to be eligible to receive a grant under subsection 7a77#c71 an entity shall-- 7#a7 be a public or private nonprofit entity with specialized experience in ,,chd2 and 7#b7 submit to the ,secretary an application at such time1 in such manner1 and containing such information as the ,secretary may require4 7e7 ,authorization of appropriations ,to carry out this section1 there is authorized to be appropriated #d1jjj1jjj for each of fiscal years #bjaf through #bjbj4 4 #c4 ,congenital heart disease research ,section #dbe of the ,public ,health ,service ,act 7#db ,u4,s4,c4 #bhe;b-#h7 is amended to read as follows3 #dbe4 ,congenital heart disease 7a7 ,in general ,the ,director of the ,institute may expand1 intensify1 and coordinate research and related activities of the ,institute with respect to congenital heart disease1 which may include congenital heart disease research with respect to-- 7#a7 causation of congenital heart disease1 including genetic causes2 7#b7 long-term outcomes in individuals with congenital heart disease1 including infants1 children1 teenagers1 adults1 and elderly individuals2 7#c7 diagnosis1 treatment1 and prevention2 7#d7 studies using longitudinal data and retrospective analysis to identify effective treatments and outcomes for individuals with congenital heart disease2 and 7#e7 identifying barriers to lifelong care for individuals with congenital heart disease4 7b7 ,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 networks4 7c7 ,minority and medically underserved communities ,in carrying out the activities described in this section1 the ,director of the ,institute shall consider the application of such research and other activities to minority and medically underserved communities4 7d7 ,report from ,,nih ,not later than #a year after the date of enactment of the ,congenital ,heart ,futures ,reauthorization ,act of #bjae1 the ,director of ,,nih1 acting through the ,director of the ,institute1 shall provide a report to ,congress-- 7#a7 outlining the ongoing research efforts of the ,national ,institutes of ,health regarding congenital heart disease2 and 7#b7 identifying-- 7,a7 future plans for research regarding congenital heart disease2 and 7,b7 the areas of greatest need for such research4 4