Page:United States Statutes at Large Volume 122.djvu/4070

 12 2 STA T .40 4 7PUBLIC LA W 110 –3 73 —O CT. 8, 2008 PublicLaw1 1 0–37 3 110 thCongres s A n Act Toamendth e PublicH ealth S e rv ice A ct to p rovide f orthee s tablishment of an Am y otrophic L ateral Sclerosis R e g istry .Beit e nac te dby t h e S enate and Hous eo fR e pr esentati v es of the U nited States of Am erica in C on g ress assemb l ed ,SECTION1. S H O R T TIT L E. ThisActmaybe cite d as the ‘ ‘A LSR e g ist r y Act ’ ’ . SEC. 2 . AM EN D MENT TO THE PUB LIC HEALTH SER V ICE ACT. P art P of tit l e I IIoftheP u blic H ealth Ser v ice Act (42U .S. C . 2 80 getse q . ) is ame n ded by adding at the end the follo w ing

‘SEC. 39 9R. AM Y OTROPHIC LATERAL SCLEROSIS RE G ISTRY. ‘‘(a) ESTABLI S HMEN T. — ‘‘( 1 )IN G ENE R AL.— N ot later than 1 year after the recei p t of the report described in subsection (b)(2)(A) , the Secretary, acting through the D irector of the Centers for Disease Control and Prevention, may, if scientifically advisable— ‘‘(A) develop a system to collect data on amyotrophic lateral sclerosis (referred to in this section as ‘ALS’) and other motor neuron disorders that can be confused with ALS, misdiagnosed as ALS, and in some cases progress to ALS, including information with respect to the incidence and prevalence of the disease in the United States and ‘‘( B ) establish a national registry for the collection and storage of such data to develop a population - based registry of cases in the United States of ALS and other motor neuron disorders that can be confused with ALS, misdiagnosed as ALS, and in some cases progress to ALS. ‘‘(2) P U R PO SE.—It is the purpose of the registry established under paragraph (1)(B) to— ‘‘(A) better describe the incidence and prevalence of ALS in the United States; ‘‘(B) e x amine appropriate factors, such as environ- mental and occupational, that may be associated with the disease; ‘‘(C) better outline k ey demographic factors (such as age, race or ethnicity, gender, and family history of individ- uals who are diagnosed with the disease) associated with the disease; ‘‘(D) better examine the connection between ALS and other motor neuron disorders that can be confused with ALS, misdiagnosed as ALS, and in some cases progress to ALS; and Deadlin e .42USC 2 80g–7 . 42 USC 20 1 n ot e. AL S R egi s t ry A c t. O ct. 8 , 2008 [ S.1 3 82 ]

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