,i #aacth ,,congress #ast ,session ,h4 ,r4 #adf ,,in ,,the ,,house ,,of ,,representatives ,january #c1 #bjac ,mr4 ,sires 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 expansion1 intensification1 and coordination of the programs and activities of the ,national ,institutes of ,health with respect to ,tourette syndrome4 #a4 ,short title ,this ,act may be cited as the ,collaborative ,academic ,research ,efforts for ,tourette ,syndrome ,act of #bjac4 #b4 ,programs of the ,national ,institutes of ,health relating to ,tourette syndrome ,part ,b of title ,,iv of the ,public ,health ,service ,act is amended by inserting after section #dji;,j 7#db ,u4,s4,c4 #bhdq7 the following3 #dji,k4 ,expansion1 intensification1 and coordination of activities with respect to ,tourette syndrome 7a7 ,in general ,the ,secretary1 acting through the ,director of ,,nih1 shall expand1 intensify1 and coordinate the programs and activities of the ,national ,institutes of ,health with respect to ,tourette syndrome4 7b7 ,data collection 7#a7 ,system ,in carrying out subsection 7a71 the ,secretary shall develop a system to collect data on ,tourette syndrome1 including epidemiologic information with respect to the incidence and prevalence of ,tourette syndrome in the ,united ,states4 7#b7 ,broad and narrow definitions ,the data collection system under paragraph 7#a7 shall provide for the collection of primary data on ,tourette syndrome1 including related data on the various conditions known to be comorbid with ,tourette syndrome4 7#c7 ,collection by population and geographical region ,the data collection system under paragraph 7#a7 shall provide for the collection of data on the availability of medical and social services for individuals with ,tourette syndrome and their families and the disaggregation of such data by population and geographical region4 7c7 ,centers of ,excellence 7#a7 ,in general ,in carrying out subsection 7a71 the ,secretary shall make awards of grants and contracts to public or nonprofit private entities to pay all or part of the cost of planning1 establishing1 improving1 and providing basic operating support for centers of excellence regarding research on ,tourette syndrome4 7#b7 ,research ,each center under paragraph 7#a7 shall conduct basic and clinical research into ,tourette syndrome4 ,such research should include investigations into the cause1 diagnosis1 early detection1 prevention1 control1 and treatment of ,tourette syndrome4 ,the centers1 as a group1 shall conduct research including the fields of developmental neurobiology1 genetics1 and psychopharmacology4 7#c7 ,services for patients 7,a7 ,in general ,a center under paragraph 7#a7 may expend amounts provided under such paragraph to carry out a program to make individuals aware of opportunities to participate as subjects in research conducted by the centers4 7,b7 ,referral and costs ,a program under subparagraph 7,a7 may1 in accordance with such criteria as the ,secretary may establish1 provide to the subjects described in such subparagraph1 referrals for health and other services1 and such patient care costs as are required for research4 7,c7 ,availability and access ,the extent to which a center can demonstrate availability and access to clinical services shall be considered by the ,secretary in decisions about awarding grants to applicants which meet the scientific criteria for funding under this section4 7#d7 ,organization of centers 7,a7 ,in general ,a center under paragraph 7#a7 may-- 7i7 use the facilities of a single institution2 or 7ii7 be formed from a consortium of cooperating institutions and patient advocacy groups in order to maximize the scope of the center's services and geographic coverage4 7,b7 ,eligibility requirements ,to be eligible to make facilities so available 7as described in subparagraph 7,a77i77 or participate in such a consortium 7as described in subparagraph 7,b771 an institution or group shall meet such requirements as the ,secretary may prescribe4 7#e7 ,number of centers2 duration of support 7,a7 ,in general ,subject to the availability of appropriations1 the ,secretary shall provide for the establishment of not fewer than four and not more than six centers under paragraph 7#a74 7,b7 ,geographical distribution ,the ,secretary shall-- 7i7 ensure that each of the centers established under paragraph 7#a7 is located in a different region of the ,united ,states than the other such centers2 and 7ii7 encourage the formation of such centers from a consortium of entities 7as described in paragraph 7#d77;,a77ii77 covering multiple ,states4 7,c7 ,duration ,support for a center established under paragraph 7#a7 may be provided under this section for a period of not to exceed #e years4 ,such period may be extended for one or more additional periods not exceeding #e years if the operations of such center have been reviewed by an appropriate technical and scientific peer review group established by the ,secretary and if such group has recommended to the ,secretary that such period should be extended4 7d7 ,research on symptomology and treatment ,in carrying out subsection 7a71 the ,secretary shall award grants on a competitive basis for research on-- 7#a7 the full range of symptomology within the ,tourette syndrome clinical spectrum2 and 7#b7 the efficacy of treatment options for particular patient subpopulations4 7e7 ,funding ,of the amounts made available to carry out the programs and activities of the ,national ,institutes of ,health for a fiscal year1 the ,secretary shall designate a portion of such amounts for carrying out the programs and activities of the ,national ,institutes of ,health with respect to ,tourette syndrome4 4