Page:United States Statutes at Large Volume 122.djvu/4071

 12 2 STA T .40 4 8PUBLIC LA W 110 –37 3 —O CT. 8 , 2008 ‘ ‘ (E)otherma tter s as re c omme nd ed by the A d vi sory C ommittee estab l ished u nder subsection (b) . ‘‘(b) A DVISORY CO M MI T T E E. — ‘‘( 1 ) EST ABL IS H ME N T.— N ot later than 1 80 days a f ter the date of the enactment of this section , the S ecretary, actin g through the D irector of the Centers for Disease Control and P revention, may establish a committee to be k no w nasthe Advisory Committee on the National A L S R egistry (referred to in this section as the ‘Advisory Committee ’ ). T he Advisory Committee shall be com p osed of not more than 27 members to be appointed by the Secretary, acting through the Centers for Disease Control and Prevention, of which— ‘‘(A) two - thirds of such members shall represent governmental agencies— ‘‘(i) including at least one member representing— ‘‘( I ) the National Institutes of H ealth, to include, upon the recommendation of the Director of the National Institutes of Health, representa- tives from the National Institute of Neurological Disorders and Stroke and the National Institute of Environmental Health Sciences ‘‘(II) the Department of V eterans Affairs; ‘‘(III) the Agency for To x ic Substances and Disease Registry; and ‘‘(IV) the Centers for Disease Control and Prevention; and ‘‘(ii) of which at least one such member shall be a clinician with expertise on ALS and related diseases, an epidemiologist with experience in data registries, a statistician, an ethicist, and a privacy expert (relating to the privacy regulations under the Health Insurance Portability and Accountability Act of 1 9 9 6 ); and ‘‘( B ) one-third of such members shall be public mem- bers, including at least one member representing— ‘‘(i) national and voluntary health associations; ‘‘(ii) patients with ALS or their family members; ‘‘(iii) clinicians with expertise on ALS and related diseases; ‘‘(iv) epidemiologists with experience in data reg- istries; ‘‘(v) geneticists or experts in genetics who have experience with the genetics of ALS or other neuro- logical diseases and ‘‘(vi) other individuals with an interest in devel- oping and maintaining the National ALS Registry. ‘‘(2) D U TIES.—The Advisory Committee may review information and make recommendations to the Secretary con- cerning— ‘‘(A) the development and maintenance of the National ALS Registry; ‘‘(B) the type of information to be collected and stored in the Registry; ‘‘(C) the manner in which such data is to be collected; ‘‘(D) the use and availability of such data including guidelines for such use; and ‘‘(E) the collection of information about diseases and disorders that primarily affect motor neurons that are Deadlin e .

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