,,ii #aafth ,,congress #ast ,session ,s4 #baeh ,,in ,,the ,,senate ,,of ,,the ,,united ,,states ,july #ah1 #bjai ,ms4 ,hassan 7for herself and ,mr4 ,gardner7 introduced the following bill2 which was read twice and referred to the ,committee on ,health1 ,education1 ,labor1 and ,pensions ,a ,,bill ,to improve certain programs of the ,department of ,health and ,human ,services with respect to heritable disorders4 #a4 ,short title ,this ,act may be cited as the ,the ,newborn ,screening ,saves ,lives ,reauthorization ,act of #bjai4 #b4 ,amendments 7a7 ,improved newborn and child screening for heritable disorders ,section #aaji7;a77#c7 of the ,public ,health ,service ,act 7#db ,u4,s4,c4 #cjj;b-#h7;a77#c77 is amended-- 7#a7 by striking develop and deliver educational programs 7at appropriate literacy levels7 and inserting develop1 deliver1 and assess the impact of educational programs 7with varying levels of information and at appropriate literacy levels72 and 7#b7 by striking and specialty services and inserting specialty services1 research-related pilot studies1 and long-term care4 7b7 ,extension of advisory committee on heritable disorders in newborns and children ,section #aaaa7;g7 of the ,public ,health ,service ,act 7#db ,u4,s4,c4 #cjj;b-#aj7;g77 is amended by striking #bjai each place it appears and inserting #bjbd4 7c7 ,technical amendments ,title ,,xi of the ,public ,health ,service ,act 7#db ,u4,s4,c4 #cjj;b-#a et seq47 is amended-- 7#a7 in the section heading of section #aaaj1 by striking ,followup and inserting ,follow-,up2 7#b7 in sections #aaji1 #aaaj1 and #aaaa1 by striking followup each place such term appears and inserting follow-up2 and 7#c7 in paragraphs 7#a7 and 7#b7 of section #aaaj7;b71 by inserting 7including long-term follow-up7 before 1 or specialty4 7d7 ,clearinghouse of newborn screening information ,subsection 7c7 of section #aaab of the ,public ,health ,service ,act 7#db ,u4,s4,c4 #cjj;b-#aa7 is amended to read as follows3 7c7 ,nonduplication ,in carrying out activities under this section1 the ,secretary shall ensure that such activities minimize duplication and complement other existing ,federal newborn screening-related information-sharing activities4 4 7e7 ,laboratory quality and surveillance ,section #aaac of the ,public ,health ,service ,act 7#db ,u4,s4,c4 #cjj;b-#ab7 is amended-- 7#a7 in subsection 7a7-- 7,a7 in paragraph 7#a7-- 7i7 by striking performance evaluation services and inserting development of new screening tests2 and 7ii7 by striking 2 and and inserting a semicolon2 7,b7 in paragraph 7#b7-- 7i7 by striking performance test materials and inserting test performance materials2 and 7ii7 by striking the period and inserting 2 and2 and 7,c7 by adding at the end the following3 7#c7 performance evaluation services to enhance disease detection1 including the development of tools and resources to improve data analysis1 interpretation of test results1 and dissemination of laboratory best practices4 2 and 7#b7 in subsection 7b7-- 7,a7 in paragraph 7#a71 by striking 2 and and inserting a semicolon2 7,b7 in paragraph 7#b71 by striking the period and inserting 2 and2 and 7,c7 by adding at the end1 the following3 7#c7 by assisting ,states1 as appropriate1 in assessing and conducting long-term follow-up and assessing long-term outcomes4 4 7f7 ,hunter ,kelly research program ,section #aaaf7;a77#a77;,d7 of the ,public ,health ,service ,act 7#db ,u4,s4,c4 #cjj;b-#ae7;a77#a77;,d77 is amended-- 7#a7 by inserting 1 or with a high probability of being recommend by1 after recommended by2 and 7#b7 by striking to ensure that screenings are ready for nationwide implementation and inserting 1 which may include those conditions that have been nominated pursuant to section #aaaa1 to ensure that screening technologies are piloted and ready for implementation4 7g7 ,authorization of appropriations ,section #aaag of the ,public ,health ,service ,act 7#db ,u4,s4,c4 #cjj;b-#af7 is amended-- 7#a7 in paragraph 7#a71 by striking #aa1ijj1jjj for each of fiscal years #bjae through #bjai and inserting #af1chc1jjj for each of fiscal years #bjbj through #bjbd2 and 7#b7 in paragraph 7#b71 by striking #h1jjj1jjj for each of fiscal years #bjae through #bjai and inserting #ag1bej1jjj for each of fiscal years #bjbj through #bjbd4 7h7 ,technical assistance ,the ,secretary shall publish on the internet website of the ,department of ,health and ,human ,services1 information regarding the process for obtaining technical assistance for submitting nominations to the recommended uniform screening panel4 7i7 ,report on the modernization of newborn screening 7#a7 ,in general ,the ,secretary of ,health and ,human ,services shall1 directly or through a contract1 conduct an assessment of each of the following3 7,a7 ,the uniform screening panel review and recommendation processes1 including an assessment of factors that impact decisions to add new conditions to the uniform screening panel and challenges associated with newly nominated conditions1 including rare diseases with late onset variants4 7,b7 ,strategies to support implementation of uniform screening panel recommendations4 7,c7 ,opportunities to improve newborn screening research1 such as piloting the screening of multiple conditions in a single test and optimizing the capacity for such research4 7,d7 ,technologies that would improve screening1 including technologies that identify multiple1 related disorders in a single test4 7,e7 ,methods to improve public health surveillance1 timeliness of diagnosis1 and short- and long-term follow-up for infants identified through newborn screening4 7,f7 ,strategies to improve communication with the public and stakeholders in order to promote understanding and knowledge of the newborn screening system4 7,g7 ,the quality of data on disease prevalence for screened conditions4 7,h7 ,the effect of newborn screening on the outcomes of those identified as newborns through such screenings4 7#b7 ,report ,not later than #b years after the date of enactment of this ,act1 the ,secretary of ,health and ,human ,services shall submit1 to the ,committee on ,health1 ,education1 ,labor1 and ,pensions of the ,senate and the ,committee on ,energy and ,commerce of the ,house of ,representatives1 a report containing the results of the assessment and recommendations to improve processes described in paragraph 7#a74