,,ii #aahth ,,congress #b;d ,session ,s4 #ciha ,,in ,,the ,,senate ,,of ,,the ,,united ,,states ,march #ai1 #bjbd,mr4 ,hickenlooper 7for himself and ,mr4 ,moran7 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 authorize the ,secretary of ,health and ,human ,services to carry out a program of research1 training1 and investigation related to ,down syndrome1 and for other purposes4 #a4 ,short title ,this ,act may be cited as the ,de,ondra ,dixon ,,include ,project ,act of #bjbd4 #b4 ,findings ,congress finds the following3 7#a7 ,down syndrome is the most common chromosomal disorder4 ,each year1 about #f1jjj babies born in the ,united ,states have ,down syndrome1 affecting about #a in every #gjj babies born4 7#b7 ,individuals with ,down syndrome have a full or partial extra copy of chromosome #ba that leads to certain physical1 intellectual1 and developmental challenges4 7#c7 ,life expectancy of individuals with ,down syndrome in the ,united ,states has increased dramatically in recent decades4 ,in #aifj1 the average life expectancy was about #aj years4 ,today1 the average life expectancy of an individual with ,down syndrome is nearly #fj years4 7#d7 ,individuals with ,down syndrome can attend school1 work1 make their own life decisions1 have meaningful relationships1 vote1 and contribute to society4 7#e7 ,individuals with ,down syndrome are at an increased risk for certain medical conditions1 such as autoimmune disorders1 leukemia1 congenital heart disease1 sleep dysfunction1 and ,alzheimer's disease1 but may be at a decreased risk for other conditions4 7#f7 ,research and medical care supporting individuals with ,down syndrome and their unique disease profile will improve health outcomes and may potentially lead to treatments for individuals born with or without ,down syndrome who suffer from diseases associated with that unique profile4 #c4 ,down syndrome research ,part ,a of title ,,iv of the ,public ,health ,service ,act 7#db ,u4,s4,c4 #bha et seq47 is amended by adding at the end the following3 #djd,p4 ,down syndrome research 7a7 ,in general ,the ,secretary1 acting through the ,office of the ,director of ,,nih1 and in consultation with other ,federal agencies and partners1 shall carry out1 directly or through grants or contracts1 a program of research1 training1 and investigation related to ,down syndrome to be known as the ,i,nvestigation of ,co-occurring conditions across the ,lifespan to ,understand ,down syndrom,e ,project or the ,,include ,project4 7b7 ,program elements ,the program under subsection 7a7 shall include research1 training1 and investigation related to-- 7#a7 high-risk1 high reward basic science studies of the effects of chromosome #ba on human development and health2 7#b7 assembling and maintaining a large study population of individuals with ,down syndrome2 7#c7 expanding the number of clinical trials that are inclusive of1 or expressly for1 individuals with ,down syndrome1 including novel biomedical and pharmacological interventions and other therapies designed to promote or enhance activities of daily living2 7#d7 the biological mechanisms in individuals with ,down syndrome responsible for structural and functional anomalies in cells1 tissues1 and organs1 cognitive and behavioral dysfunction1 and stunted growth2 7#e7 the identification of biomarkers for the detection of risk factors1 diagnosis1 and customized interventions and treatments for conditions co-occurring with ,down syndrome2 7#f7 why several co-occurring conditions1 such as ,alzheimer's disease and autoimmunity1 are prevalent in individuals with ,down syndrome and how such conditions can be treated concurrently with ,down syndrome2 and 7#g7 improving the quality of life of individuals with ,down syndrome and their families4 7c7 ,coordination2 prioritizing nonduplicative research ,the ,secretary shall ensure that-- 7#a7 the programs and activities of the institutes1 centers1 agencies1 and offices of the ,national ,institutes of ,health relating to ,down syndrome and co-occurring conditions are coordinated1 including through the ,division of ,program ,coordination1 ,planning1 and ,strategic ,initiatives under sections #djb7;b77#g7 and #djb;,a7c72 and 7#b7 such institutes1 centers1 agencies1 and offices prioritize1 as appropriate1 ,down syndrome research that does not duplicate existing research activities of the ,national ,institutes of ,health4 7d7 ,technical assistance ,the ,secretary shall provide technical assistance to grantees and other involved entities1 as appropriate1 for carrying out activities pursuant to this section4 7e7 ,biennial reports to ,congress 7#a7 ,in general ,the ,secretary shall submit1 on a biennial basis1 to the ,committee on ,energy and ,commerce and the ,subcommittee on ,labor1 ,health and ,human ,services1 ,education and ,related ,agencies of the ,committee on ,appropriations of the ,house of ,representatives and the ,committee on ,health1 ,education1 ,labor1 and ,pensions and the ,subcommittee on ,labor1 ,health and ,human ,services1 ,education1 and ,related ,agencies of the ,committee on ,appropriations of the ,senate1 a report that catalogs the research conducted or supported under this section4 7#b7 ,contents ,each report under paragraph 7#a7 shall include-- 7,a7 identification of the institute1 center1 agency1 office1 or entity involved2 7,b7 a statement of whether the research is or was being carried out directly by the institute1 center1 agency1 office1 or entity or by multiple institutes1 centers1 agencies1 offices1 or entities2 and 7,c7 identification of any resulting real world evidence that is or may be used for clinical research and medical care for patients with ,down syndrome4 7f7 ,authorization of appropriations 7#a7 ,in general ,to carry out this section1 there is authorized to be appropriated #bej1jjj1jjj for each of fiscal years #bjbe through #bjbi4 7#b7 ,supplement1 not supplant ,funds appropriated to carry out this section shall be used to supplement1 not supplant1 other funds allocated by the ,national ,institutes of ,health for research and other activities relating to ,down syndrome4 4