,,ii #aaeth ,,congress #ast ,session ,s4 #dgg ,,in ,,the ,,senate ,,of ,,the ,,united ,,states ,february #bh1 #bjag,mr4 ,durbin 7for himself and ,mr4 ,casey7 introduced the following bill2 which was read twice and referred to the ,committee on ,health1 ,education1 ,labor1 and ,pensions ,a ,,bill ,to amend the ,public ,health ,service ,act to coordinate ,federal congenital heart disease research and surveillance 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 #bjag4 #b4 ,national congenital heart disease cohort study1 surveillance1 and awareness campaign ,section #cii,v-#b of the ,public ,health ,service ,act 7#db ,u4,s4,c4 #bhj;g-#ac7 is amended-- 7#a7 by amending the section heading to read as follows3 ,national congenital heart disease cohort study1 surveillance system1 and awareness campaign2 7#b7 by amending subsection 7a7 to read as follows3 7a7 ,in general 7#a7 ,activities ,the ,secretary 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 ,,chd7 across the lifespan2 and 7,b7 plan and implement a public outreach and education campaign regarding ,,chd across the lifespan4 7#b7 ,grants ,the ,secretary may award grants to eligible entities to carry out the activities described in subsections 7b71 7c71 and 7d74 2 7#c7 in subsection 7b7-- 7,a7 in the heading1 by striking ,purpose and inserting ,national ,congenital ,heart ,disease ,surveillance ,system2 and 7,b7 by striking ,the purpose of the ,congenital ,heart ,disease ,surveillance ,system shall be to facilitate and inserting the following3 7#a7 ,in general ,the ,secretary shall establish a ,congenital ,heart ,disease ,surveillance ,system for the purpose of facilitating 2 7#d7 in subsection 7c7-- 7,a7 in paragraph 7#b71 by redesignating subparagraphs 7,a7 through 7,e7 as clauses 7i7 through 7v71 respectively1 and adjusting the margins accordingly2 7,b7 by redesignating paragraphs 7#a7 through 7#c7 as subparagraphs 7,a7 through 7,c71 respectively1 and adjusting the margins accordingly2 and 7,c7 by redesignating such subsection 7c7 as paragraph 7#b7 of subsection 7b7 and adjusting the margin accordingly2 7#e7 by striking subsections 7d7 and 7e7 and inserting the following3 7c7 ,national congenital heart disease cohort study 7#a7 ,in general ,the ,secretary1 acting through the ,director of the ,centers for ,disease ,control and ,prevention1 shall plan1 develop1 implement1 and submit annual reports to the ,congress on research and surveillance activities of the ,centers for ,disease ,control and ,prevention1 including 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 individuals 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 appropriate protections of personal information1 including protections required under paragraph 7#d71 data generated from the study under this subsection and through the ,congenital ,heart ,disease ,surveillance ,system under subsection 7b7 shall be made available for purposes of ,,chd research and to the public4 7#d7 ,patient privacy ,the ,secretary shall ensure that the study under this subsection and the ,congenital ,heart ,disease ,surveillance ,system under subsection 7b7 are 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 7d7 ,congenital heart disease awareness campaign 7#a7 ,in general ,the ,secretary1 acting through the ,director of the ,centers for ,disease ,control and ,prevention1 shall establish and implement an awareness1 outreach1 and education campaign regarding ,,chd across the lifespan4 ,the information expressed through such campaign may-- 7,a7 emphasize the prevalence of ,,chd2 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 or electronic materials distributed via television1 radio1 ,internet1 or other commercial marketing venues4 2 7#f7 by redesignating subsection 7f7 as subsection 7e72 and 7#g7 by adding at the end the following3 7f7 ,authorization of appropriations ,to carry out this section1 there are authorized to be appropriated such sums as may be necessary for each of fiscal years #bjag through #bjba4 4 #c4 ,congenital heart disease research ,section #dbe of the ,public ,health ,service ,act 7#db ,u4,s4,c4 #bhe;b-#h7 is amended by adding the end the following3 7d7 ,report from ,,nih ,not later than #a year after the date of enactment of the ,congenital ,heart ,futures ,reauthorization ,act of #bjag1 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