,,ii ,calendar ,no4 #djh #aadth ,,congress #b;d ,session ,s4 #hdi ,,in ,,the ,,senate ,,of ,,the ,,united ,,states ,march #bd1 #bjae,mr4 ,isakson 7for himself1 ,mr4 ,murphy1 ,mr4 ,vitter1 ,mr4 ,casey1 ,mr4 ,wicker1 ,ms4 ,baldwin1 ,mr4 ,coons1 ,mrs4 ,boxer1 ,mr4 ,cassidy1 ,ms4 ,stabenow1 ,mrs4 ,feinstein1 ,mr4 ,kirk1 ,mr4 ,menendez1 ,mr4 ,carper1 ,mr4 ,reed1 ,mr4 ,markey1 ,mr4 ,peters1 ,mrs4 ,gillibrand1 ,ms4 ,murkowski1 ,ms4 ,klobuchar1 ,mr4 ,booker1 ,mr4 ,alexander1 ,mr4 ,nelson1 and ,mr4 ,boozman7 introduced the following bill2 which was read twice and referred to the ,committee on ,health1 ,education1 ,labor1 and ,pensions ,april #d1 #bjaf,reported by ,mr4 ,alexander1 with an amendment,strike out all after the enacting clause and insert the part printed in italic ,a ,,bill ,to amend the ,public ,health ,service ,act to provide for systematic data collection and analysis and epidemiological research regarding ,multiple ,sclerosis 7,,ms71 ,parkinson's disease1 and other neurological diseases4 #a4 ,short title ,this ,act may be cited as the ,advancing ,research for ,neurological ,diseases ,act of #bjae4 #b4 ,national neurological diseases surveillance system ,part ,p of title ,,iii of the ,public ,health ,service ,act 7#db ,u4,s4,c4 #bhj;g et seq47 is amended by adding at the end the following3 #cii,v-#f ,surveillance of neurological diseases 7a7 ,in general ,the ,secretary1 acting through the ,director of the ,centers for ,disease ,control and ,prevention1 shall-- 7#a7 enhance and expand infrastructure and activities to track the epidemiology of neurological diseases1 including multiple sclerosis and ,parkinson's disease2 and 7#b7 incorporate information obtained through such activities into a statistically sound1 scientifically credible1 integrated surveillance system1 to be known as the ,national ,neurological ,diseases ,surveillance ,system4 7b7 ,research ,the ,secretary shall ensure that the ,national ,neurological ,diseases ,surveillance ,system is designed in a manner that facilitates further research on neurological diseases4 7c7 ,content ,in carrying out subsection 7a71 the ,secretary-- 7#a7 shall provide for the collection and storage of information on the incidence and prevalence of neurological diseases in the ,united ,states2 7#b7 to the extent practicable1 shall provide for the collection and storage of other available information on neurological diseases1 such as information concerning-- 7,a7 demographics and other information associated or possibly associated with neurological diseases1 such as age1 race1 ethnicity1 sex1 geographic location1 and family history2 7,b7 risk factors associated or possibly associated with neurological diseases1 including genetic and environmental risk factors2 and 7,c7 diagnosis and progression markers2 7#c7 may provide for the collection and storage of information relevant to analysis on neurological diseases1 such as information concerning-- 7,a7 the epidemiology of the diseases2 7,b7 the natural history of the diseases2 7,c7 the prevention of the diseases2 7,d7 the detection1 management1 and treatment approaches for the diseases2 and 7,e7 the development of outcomes measures2 and 7#d7 may address issues identified during the consultation process under subsection 7d74 7d7 ,consultation ,in carrying out this section1 the ,secretary shall consult with individuals with appropriate expertise1 including-- 7#a7 epidemiologists with experience in disease surveillance or registries2 7#b7 representatives of national voluntary health associations that-- 7,a7 focus on neurological diseases1 including multiple sclerosis and ,parkinson's disease2 and 7,b7 have demonstrated experience in research1 care1 or patient services2 7#c7 health information technology experts or other information management specialists2 7#d7 clinicians with expertise in neurological diseases2 and 7#e7 research scientists with experience conducting translational research or utilizing surveillance systems for scientific research purposes4 7e7 ,grants ,the ,secretary may award grants to1 or enter into contracts or cooperative agreements with1 public or private nonprofit entities to carry out activities under this section4 7f7 ,coordination with other ,federal agencies ,subject to subsection 7h71 the ,secretary shall make information and analysis in the ,national ,neurological ,diseases ,surveillance ,system available1 as appropriate1 to ,federal departments and agencies1 such as the ,national ,institutes of ,health1 the ,food and ,drug ,administration1 the ,centers for ,medicare ,medicaid ,services1 the ,agency for ,healthcare ,research and ,quality1 the ,department of ,veterans ,affairs1 and the ,department of ,defense4 7g7 ,public access ,subject to subsection 7h71 the ,secretary shall make information and analysis in the ,national ,neurological ,diseases ,surveillance ,system available1 as appropriate1 to the public1 including researchers4 7h7 ,privacy ,the ,secretary shall ensure that privacy and security protections applicable to the ,national ,neurological ,diseases ,surveillance ,system are at least as stringent as the privacy and security protections under ,,hipaa privacy and security law 7as defined in section #cjji7;a77#b774 7i7 ,report ,not later than #d years after the date of the enactment of this section1 the ,secretary shall submit a report to the ,congress concerning the implementation of this section4 ,such report shall include information on-- 7#a7 the development and maintenance of the ,national ,neurological ,diseases ,surveillance ,system2 7#b7 the type of information collected and stored in the ,system2 7#c7 the use and availability of such information1 including guidelines for such use2 and 7#d7 the use and coordination of databases that collect or maintain information on neurological diseases4 7j7 ,definition ,in this section1 the term national voluntary health association means a national nonprofit organization with chapters1 other affiliated organizations1 or networks in ,states throughout the ,united ,states4 7k7 ,authorization of appropriations ,to carry out this section1 there is authorized to be appropriated #e1jjj1jjj for each of fiscal years #bjae through #bjai4 4 #a4 ,short title ,this ,act may be cited as the ,advancing ,research for ,neurological ,diseases ,act of #bjaf4 #b4 ,advancing research for neurological diseases ,part ,p of title ,,iii of the ,public ,health ,service ,act 7#db ,u4,s4,c4 #bhj;g et seq47 is amended by inserting after section #cii,s1 the following3 #cii,s-#a4 ,advancing research for neurological diseases 7a7 ,in general ,the ,secretary may improve the collection of epidemiological and surveillance data on neurological diseases 7including1 for purposes of this section1 both neurological diseases and neurological conditions71 which may include the incorporation of such data into a registry1 to facilitate research and improve public health1 including1 as appropriate1 by leveraging existing surveillance activities and registries established under this ,act4 7b7 ,content ,in carrying out subsection 7a71 the ,secretary-- 7#a7 shall provide for the collection and storage of information to better describe the incidence and prevalence of neurological diseases in the ,united ,states identified under paragraph 7#b72 7#b7 shall initially identify and focus on up to five neurological diseases that available data indicate are the most prevalent or present a significant public health burden2 7#c7 shall identify1 build upon1 leverage1 and coordinate among existing data and surveillance systems1 surveys1 registries1 and other existing ,federal public health and infrastructure wherever possible2 7#d7 shall ensure that any neurological disease surveillance activities conducted pursuant to this section1 including any such registry1 are designed in a manner that facilitates research on neurological diseases2 7#e7 shall1 to the extent practicable1 provide for the collection and storage of information relevant to the identified neurological diseases1 such as-- 7,a7 demographics1 such as age1 race1 ethnicity1 sex1 geographic location1 and family history1 and other information1 as appropriate2 7,b7 risk factors that may be associated with certain neurological diseases2 and 7,c7 diagnosis and progression markers2 7#f7 may provide for the collection and storage of additional information relevant to analysis on neurological diseases1 such as information regarding-- 7,a7 the natural history of the diseases2 7,b7 the prevention1 detection1 management1 and treatments or treatment approaches for the diseases2 and 7,c7 the development of outcomes measures2 and 7#g7 may address issues identified during the consultation process described in subsection 7c74 7c7 ,consultation ,in carrying out this section1 the ,secretary shall consult with experts1 who may include-- 7#a7 epidemiologists with experience in disease surveillance or registries2 7#b7 representatives of national and voluntary health associations that focus on neurological diseases and have demonstrated experience in research1 care1 or patient services2 7#c7 health information technology experts or other information management specialists2 7#d7 clinicians with expertise in neurological diseases2 and 7#e7 research scientists with experience conducting translational research or utilizing surveillance systems or registries for scientific research purposes4 7d7 ,grants ,the ,secretary may award grants to1 or enter into contracts or cooperative agreements with1 public or private nonprofit entities to carry out activities under this section4 7e7 ,coordination with other federal agencies ,consistent with applicable privacy laws1 the ,secretary shall make information and analysis pertaining to information collected under this section available1 as appropriate1 to relevant ,federal departments and agencies4 7f7 ,access for biomedical research ,the ,secretary shall make data collected under this section available for purposes of biomedical research as determined appropriate by the ,secretary1 to the extent permitted by applicable laws1 and in a manner that protects personal privacy4 7g7 ,reports 7#a7 ,interim report ,not later than #a year after the date on which any registry is established and operational under this section1 the ,secretary shall submit an interim report to the ,committee on ,health1 ,education1 ,labor1 and ,pensions of the ,senate and the ,committee on ,energy and ,commerce of the ,house of ,representatives regarding aggregate information collected pursuant to this section and epidemiological analyses1 as appropriate4 ,such report shall be posted on the ,internet website of the ,department of ,health and ,human ,services and shall be updated biennially thereafter4 7#b7 ,implementation report ,not later than #d years after the date of the enactment of this section1 the ,secretary shall submit a report to the ,committee on ,health1 ,education1 ,labor1 and ,pensions of the ,senate and the ,committee on ,energy and ,commerce of the ,house of ,representatives regarding the implementation of this section4 ,such report shall include information on-- 7,a7 the development and maintenance of any means of collecting neurological disease surveillance information gathered pursuant to this section2 7,b7 the type of information collected and stored2 7,c7 the use and availability of such information1 including guidelines for such use2 and 7,d7 the use and coordination of databases that collect or maintain information on neurological diseases4 4 ,april #d1 #bjaf,reported with an amendment