#aai? ,,congress #b;d ,session ,s4 #ahch ,,an ,,act ,to am5d ! ,public ,heal? ,s]vice ,act to au?orize ! ,secret>y ( ,heal? & ,human ,s]vices to c>ry out a program ( rese>*1 tra9+1 & inve/igation relat$ to ,d[n syndrome1 & = o!r purposes4 #a4 ,%ort title ,?is ,act may be cit$ z ! ,de,ondra ,dixon ,,include ,project ,act ( #bjbf4 #b4 ,de,ondra ,dixon ,,include ,project ,"p ,b ( title ,,iv ( ! ,public ,heal? ,s]vice ,act 7#db ,u4,s4,c4 #bhd et seq47 is am5d$ by add+ at ! end ! foll[+3 #dji,k4 ,d[n syndrome rese>* 7a7 ,9 g5]al ,! ,director ( ,,nih %all c>ry out a program ( rese>*1 tra9+1 & inve/igation relat$ to ,d[n syndrome to be kn[n z ! ,i,nvestigation ( ,co-occurr+ conditions across ! ,lifespan to ,und]/& ,d[n syndrom,e ,project or ! ,,include ,project4 7b7 ,program elem5ts ,! program "u subsection 7a7 %all include-- 7#a7 high-risk1 high-rew>d rese>* on ! effects ( trisomy #ba on human developm5t & heal?2 7#b7 promot+ rese>* = p>ticipants ) ,d[n syndrome across ! lifespan1 includ+ cohort /udies to facilitate improv$ und]/&+ ( ,d[n syndrome & co-occurr+ conditions & developm5t ( new int]v5tions2 7#c7 exp&+ ! numb] ( cl9ical trials t are inclusive (1 or expressly =1 p>ticipants ) ,d[n syndrome1 includ+ novel biom$ical & ph>macological int]v5tions & o!r !rapies design$ to promote or enhance activities ( daily liv+2 7#d7 rese>* on ! biological me*anisms 9 individuals ) ,d[n syndrome p]ta9+ to /ructural1 functional1 & behavioral anomalies & dysfunction z well z /unt$ gr[?2 7#e7 support+ rese>* to improve diagnosis & treatm5t ( conditions co-occurr+ ) ,d[n syndrome1 includ+ ! id5tification ( biom>k]s relat$ to risk factors1 diagnosis1 & cl9ical rese>* & !rapeutics2 7#f7 rese>* on ! causes ( increas$ preval5ce1 & concurr5t treatm5t1 ( co-occurr+ conditions1 su* z ,alzheim]'s disease & relat$ dem5tias & autoimmunity1 9 individuals ) ,d[n syndrome2 & 7#g7 rese>*1 tra9+1 & inve/igation on improv+ ! quality ( life ( individuals ) ,d[n syndrome & _! families4 7c7 ,coord9ation2 prioritiz+ nonduplicative rese>* ,! ,director ( ,,nih %all ensure t-- 7#a7 ! programs & activities ( ! in/itutes & c5t]s ( ! ,national ,in/itutes ( ,heal? relat+ to ,d[n syndrome & co-occurr+ conditions are coord9at$1 includ+ ?r\gh ! ,(fice ( ! ,director ( ,,nih & priority-sett+ reviews conduct$ pursuant to section #djb7;b77#c72 & 7#b7 su* in/itutes & c5t]s1 prioritize1 z appropriate1 ,d[n syndrome rese>* t does n duplicate exi/+ rese>* activities ( ! ,national ,in/itutes ( ,heal?4 7d7 ,consultation ) /akehold]s ,9 c>ry+ out activities "u ?is section1 ! ,director ( ,,nih %all1 z appropriate & to ! maximum ext5t feasible1 consult ) relevant /akehold]s1 includ+ pati5t advocates1 to ensure t su* activities take into consid]ation ! ne$s ( individuals ) ,d[n syndrome4 7e7 ,bi5nial reports to ,congress 7#a7 ,9 g5]al ,! ,director ( ,,nih %all submit1 on a bi5nial basis1 to ! ,committee on ,en]gy & ,comm]ce & ! ,subcommittee on ,labor1 ,heal? & ,human ,s]vices1 ,education1 & ,relat$ ,ag5cies ( ! ,committee on ,appropriations ( ! ,h\se ( ,repres5tatives & ! ,committee on ,heal?1 ,education1 ,labor1 & ,p5sions & ! ,subcommittee on ,labor1 ,heal? & ,human ,s]vices1 ,education1 & ,relat$ ,ag5cies ( ! ,committee on ,appropriations ( ! ,s5ate1 a report t catalogs ! rese>* conduct$ or support$ "u ?is section4 7#b7 ,cont5ts ,ea* report "u p>agraph 7#a7 %all include-- 7,a7 id5tification ( ! in/itute or c5t] involv$2 7,b7 a /atem5t ( :e!r ! rese>* is or 0 be+ c>ri$ out directly by su* in/itute or c5t] or by multiple in/itutes & c5t]s2 & 7,c7 id5tification ( any result+ real-_w evid5ce t is or may be us$ = cl9ical rese>* & m$ical c>e = pati5ts ) ,d[n syndrome4 4 ,pass$ ! ,s5ate ,augu/ #f1 #bjbf4,secret>y