12 2 STA T .40 4 9PUBLIC LA W 110 –37 3 —O CT. 8, 2008 consider ed essen t i al to fu rt h erin g the stud y and cure of ALS.‘ ‘ (3)REPORT . —N ot later than 270 days after the date on w hich the Ad v isory C o m mittee is esta b lished , the Advisory Committee may submit a re p ort to the Secretary concerning the review conducted under paragraph (2) that contains the recommendations of the Advisory Committee with respect to the results of such review. ‘‘(c) G R AN T S .— T he Secretary, acting through the D irector of the Centers for Disease Control and P revention, may award grants to, and enter into contracts and cooperative agreements with, public or private nonprofit entities for the collection, analysis, and reporting of data on ALS and other motor neuron disorders that can be confused with ALS, misdiagnosed as ALS, and in some cases progress to ALS after receiving the report under subsection (b)(3). ‘‘(d) COOR DI NATION W IT H STATE, LO C A L , AND F EDERAL RE G- ISTRIES.— ‘‘( 1 ) I N GENERAL.—In establishing the National ALS Reg- istry under subsection (a), the Secretary, acting through the Director of the Centers for Disease Control and Prevention, may— ‘‘(A) identify, build upon, e x pand, and coordinate among existing data and surveillance systems, surveys, registries, and other Federal public health and environ- mental infrastructure wherever possible, which may include— ‘‘(i) any registry pilot pro j ects previously supported by the Centers for Disease Control and Prevention
‘‘(ii) the Department of V eterans Affairs ALS Reg- istry; ‘‘(iii) the DNA and Cell Line Repository of the National Institute of Neurological Disorders and Stro k e H uman Genetics Resource Center at the National Institutes of Health; ‘‘(iv) Agency for Toxic Substances and Disease Reg- istry studies, including studies conducted in Illinois, M issouri, E l Paso and San Antonio, Texas, and Massachusetts; ‘‘(v) State-based ALS registries; ‘‘(vi) the National Vital Statistics System; and ‘‘(vii) any other existing or relevant databases that collect or maintain information on those motor neuron diseases recommended by the Advisory Committee established in subsection (b); and ‘‘( B ) provide for research access to ALS data as rec- ommended by the Advisory Committee established in sub- section (b) to the extent permitted by applicable statutes and regulations and in a manner that protects personal privacy consistent with applicable privacy statutes and regulations. ‘‘(C) COORDINATION W ITH NIH AND DEPART M ENT O FV ET- ERANS AFFAIRS.—Consistent with applicable privacy stat- utes and regulations, the Secretary may ensure that epidemiological and other types of information obtained under subsection (a) is made available to the National
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