,i #aacth ,,congress #ast ,session ,h4 ,r4 #aeia ,,in ,,the ,,house ,,of ,,representatives ,april #ag1 #bjac ,mr4 ,carter 7for himself1 ,mr4 ,burgess1 ,ms4 ,speier1 ,mr4 ,king of ,new ,york1 ,mr4 ,mc,caul1 and ,mr4 ,rangel7 introduced the following bill2 which was referred to the ,committee on ,energy and ,commerce ,a ,,bill ,to amend the ,public ,health ,service ,act to provide for the establishment and maintenance of an undiagnosed diseases network1 and for other purposes4 #a4 ,short title ,this ,act may be cited as the ,charles ,august ,long ,undiagnosed ,diseases ,research and ,collaboration ,network ,act of #bjac or the ,,cal ,undiagnosed ,diseases ,research and ,collaboration ,network ,act of #bjac 4 #b4 ,,cal ,network of undiagnosed diseases ,title ,,iii of the ,public ,health ,service ,act 7#db ,u4,s4,c4 #bda et seq47 is amended by inserting after section #cag,t the following3 #cag,u4 ,the ,national ,,cal ,network of ,undiagnosed ,diseases 7a7 ,establishment ,the ,secretary1 acting through the ,director of ,,nih1 shall establish and maintain an undiagnosed diseases patient network 7in this section referred to as the ,,cal ,network74 7b7 ,purposes ,the purposes of the ,,cal ,network shall be to-- 7#a7 provide physicians who are handling cases of undiagnosed diseases with a means1 consistent with applicable privacy laws1 including ,,hipaa privacy and security law 7as defined in section #cjji7;a77#b771 to search for similar cases and to network and collaborate with the physicians handling such similar cases in order to find a diagnosis and to improve patient care and outcomes2 7#b7 better enable and examine cross-disease research whereby cases of undiagnosed diseases can be cross-referenced against attributes of common diseases and rare diseases to assist in the rendering of a diagnosis2 elucidate commonalities2 identify atypical presentations1 rare subgroups1 similar findings2 and identify potential treatments2 7#c7 better describe the types and prevalence of cases of undiagnosed diseases in the ,united ,states2 7#d7 make necessary data available to elucidate appropriate factors 7such as genetic1 environmental1 and occupational factors7 that may be associated with the various types of cases of undiagnosed diseases reported by individuals specified by the ,director of ,,nih2 7#e7 better outline key demographic factors 7such as age1 race or ethnicity1 gender1 sex1 geographic location1 and family medical history7 of individuals who are undiagnosed2 7#f7 provide such data necessary to better understand the length of time for a diagnoses to be rendered in cases of undiagnosed diseases and to identify barriers to diagnoses and reasons for misdiagnosis of diseases2 and 7#g7 provide such information necessary to determine1 in order to improve access of individuals with undiagnosed diseases throughout the ,united ,states 7including those with severe illnesses which limit or restrict travel7 to programs similar to the ,undiagnosed ,disease ,program conducted at the ,national ,institutes of ,health1 if the needs and number of such individuals support-- 7,a7 the expansion of such ,undiagnosed ,disease ,program1 as in existence as of the date of the enactment of this section1 to include the establishment of additional undiagnosed diseases programs of like scope and nature at other locations throughout the ,united ,states2 and 7,b7 the establishment by entities other than the ,national ,institutes of ,health of separate undiagnosed disease programs of like scope and nature to the ,undiagnosed ,disease ,program at locations throughout the ,united ,states under the guidance of and through grants provided by and through such ,undiagnosed ,diseases ,program4 7c7 ,content of the ,,cal ,network ,the ,secretary shall include in the ,,cal ,network such information respecting undiagnosed diseases as the ,secretary deems appropriate for the purposes described in subsection 7b7 and other purposes to facilitate the early recognition1 treatment1 cure1 and control of such diseases4 7d7 ,availability 7#a7 ,design requirements ,subject to paragraph 7#b71 for the purposes described in subsection 7c7 and consistent with applicable privacy laws1 including ,,hipaa privacy and security law 7as defined in section #cjji7;a77#b771 the ,secretary shall ensure that the ,,cal ,network is designed in such a manner as to-- 7,a7 make the information in the ,,cal ,network available to appropriate health care professionals1 patients1 and other qualified individuals and organizations1 as determined by the ,secretary1 who are registered to access such network in accordance with such process and requirements as specified by the ,secretary2 7,b7 make epidemiological and other types of information obtained through the ,,cal ,network available to ,federal agencies and health-related agencies2 7,c7 provide for different levels and types of access to such network to be granted based on the circumstances and individuals involved2 and 7,d7 allow for an individual to have only the level and type of access to the network so granted4 7#b7 ,information which may not be publically disclosed ,the design under paragraph 7#a7 shall ensure that the following information is not publicly disclosed3 7,a7 ,individually identifiable information4 7,b7 ,trade secrets or commercial or financial information obtained from a person and privileged or confidential1 as provided in section #eeb7;b77#d7 of title #e1 ,united ,states ,code4 7e7 ,grants ,the ,secretary1 acting through the ,director of ,,nih1 may award grants to1 and enter into contracts and cooperative agreements with1 public or private nonprofit entities for-- 7#a7 the collection1 analysis1 and reporting of data on cases of undiagnosed diseases and other disorders that can often go undiagnosed or be misdiagnosed as other diseases or disorders2 and 7#b7 the establishment of separate undiagnosed disease programs described in subsection 7b77#g77;,b74 7f7 ,implementation schedule ,in carrying out this section1 the ,secretary shall-- 7#a7 not later than #a year after the date of the enactment of this section1 complete any study1 research1 and development necessary to implement the ,,cal ,network2 and 7#b7 complete the implementation of the ,,cal ,network such that it is fully operational by not later than ,september #cj1 #bjae4 7g7 ,undiagnosed diseases defined ,for purposes of this section1 the term undiagnosed disease means a medically unexplained chronic multi-symptom disease that-- 7#a7 causes the decline of1 limitations in1 or cessation of a person's developmental status1 functional status1 quality of life1 or any combination thereof2 7#b7 has not been diagnosed by a medical specialist in a tertiary medical center2 7#c7 is defined by a cluster of signs or symptoms2 which by history1 physical examination1 and laboratory tests cannot be attributed to any known clinical diagnosis2 7#d7 is without conclusive pathophysiology or etiology2 7#e7 is characterized by overlapping symptoms and signs2 or 7#f7 exhibits an inconsistent demonstration of laboratory abnormalities4 7h7 ,authorization of appropriations 7#a7 ,in general ,to carry out this section1 there are authorized to be appropriated #e1jjj1jjj for the period of fiscal years #bjad through #bjai4 7#b7 ,offset ,to offset amounts appropriated pursuant to the authorization of appropriations in paragraph 7#a71 the ,secretary shall reduce funds that would otherwise be obligated and expended under the account heading ,national ,institutes of ,health-,office of the ,director by #e1jjj1jjj for the period of fiscal years #bjad through #bjai4 4