,,ii ,calendar ,no4 #eee #aaeth ,,congress #b;d ,session ,h4 ,r4 #abbb ,,in ,,the ,,senate ,,of ,,the ,,united ,,states ,february #bg1 #bjah,received2 read twice and referred to the ,committee on ,health1 ,education1 ,labor1 and ,pensions ,august #ae1 #bjah,reported by ,mr4 ,alexander1 with an amendment,strike out all after the enacting clause and insert the part printed in italic ,,an ,,act ,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 #bjag4 #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 ,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 ,,chd72 and 7#b7 award grants to eligible entities to undertake the activities described in this section4 7b7 ,national congenital heart disease study 7#a7 ,in general ,the ,secretary shall plan1 develop1 implement1 and submit one or more reports to the ,congress on a 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 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 ,,chd1 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 ,data generated from the study under this subsection shall be made available-- 7,a7 for purposes of ,,chd research1 subject to appropriate protections of personal privacy1 including protections required by paragraph 7#d72 and 7,b7 to the public1 subject to paragraph 7#d7 and with appropriate exceptions for protection of personal privacy4 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 ,eligibility for grants ,to be eligible to receive a grant under subsection 7a77#b71 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 7d7 ,authorization of appropriations ,to carry out this section1 there is authorized to be appropriated #d1jjj1jjj for each of fiscal years #bjah through #bjbb4 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 the 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 #a4 ,short title ,this ,act may be cited as the ,congenital ,heart ,futures ,reauthorization ,act of #bjag4 #b4 ,national congenital heart disease research1 surveillance1 and awareness ,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 ,secretary shall1 as appropriate-- 7#a7 enhance and expand research and data collection efforts related to congenital heart disease1 including to study and track the epidemiology of congenital heart disease to understand health outcomes for individuals with congenital heart disease across all ages2 7#b7 conduct activities to improve public awareness of1 and education related to1 congenital heart disease1 including care of individuals with such disease2 and 7#c7 award grants to entities to undertake the activities described in this section4 7b7 ,activities 7#a7 ,in general ,the ,secretary shall carry out activities1 including1 as appropriate1 through a national cohort study and a nationally-representative1 population-based surveillance system1 to improve the understanding of the epidemiology of congenital heart disease in all age groups1 with particular attention to-- 7,a7 the incidence and prevalence of congenital heart disease in the ,united ,states2 7,b7 causation and risk factors associated with1 and natural history of1 congenital heart disease2 7,c7 health care utilization by individuals with congenital heart disease2 7,d7 demographic factors associated with congenital heart disease1 such as age1 race1 ethnicity1 sex1 and family history of individuals who are diagnosed with the disease2 and 7,e7 evidence-based practices related to care and treatment for individuals with congenital heart disease4 7#b7 ,permissible considerations ,in carrying out the activities under this section1 the ,secretary may1 as appropriate-- 7,a7 collect data on the health outcomes1 including behavioral and mental health outcomes1 of a diverse population of individuals of all ages with congenital heart disease1 such that analysis of the outcomes will inform evidence-based practices for individuals with congenital heart disease2 and 7,b7 consider health disparities among individuals with congenital heart disease1 which may include the consideration of prenatal exposures4 7c7 ,awareness campaign ,the ,secretary may carry out awareness and educational activities related to congenital heart disease in individuals of all ages1 which may include information for patients1 family members1 and health care providers1 on topics such as the prevalence of such disease1 the effect of such disease on individuals of all ages1 and the importance of long-term1 specialized care for individuals with such disease4 7d7 ,public access ,the ,secretary shall ensure that1 subject to subsection 7e71 information collected under this section is made available1 as appropriate1 to the public1 including researchers4 7e7 ,patient privacy ,the ,secretary shall ensure that the data and information collected under this section are made available in a manner that1 at a minimum1 protects personal privacy to the extent required by applicable ,federal and ,state law4 7f7 ,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 congenital heart disease2 and 7#b7 submit to the ,secretary an application at such time1 in such manner1 and containing such information as the ,secretary may require4 7g7 ,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 #bjai through #bjbc4 4 #c4 ,report ,not later than #c years after the date of enactment of the ,congenital ,heart ,futures ,reauthorization ,act of #bjag1 the ,secretary of ,health and ,human ,services shall submit to the ,committee on ,health1 ,education1 ,labor1 and ,pensions of the ,senate and the ,committee on ,energy and ,commerce of the ,house of ,representatives a report summarizing any activities carried out pursuant to section #cii,v-#b of the ,public ,health ,service ,act 7as amended by section #b71 including planned activities1 and a summary of any research findings and ongoing research efforts1 gaps1 and areas of greatest need within the ,department of ,health and ,human ,services regarding congenital heart disease in patients of all ages4 ,august #ae1 #bjah,reported with an amendment