12 2 STA T .405 0 PUBLIC LA W 110 –37 3 —O CT. 8, 2008 LEGIS L AT I V E H IST ORY— S .1382( H.R. 22 95): HO U SE RE P ORTS: No . 11 0– 3 7 9 ac co mp a nyi n g H.R. 2295 ( C omm. on En er gy an d Commerce). CONGRESSIONAL RECOR D, Vo l .15 4 (2008): Sep t . 23, con s idered and passed Senate. Sept. 25, 2 6 , considered and passed Ho u se. Insti t u t e s ofH e al t h an d the D e p a r t m ent of V eterans A ffairs .‘ ‘ ( e ) D EFIN I T I O N. —F or the purposes of this se c tion , the term ‘national v oluntar y health association ’ means a national non - profit or g ani z ation w ith chapters or other affiliated organizations in S tates throughout the U nited States with e x perience serving the popu- lation of individuals with A L S and have demonstrated experience in ALS research, care, and patient services.’’. SEC.3 . R E PO R T O N RE GI STRIES. N ot later than 18 months after the date of enactment of this Act, the Secretary of Health and Human Services may su b mit to the appropriate committees of C ongress a report outlining— (1) the registries currently under way
( 2 ) future planned registries; ( 3 ) the criteria involved in determining what registries to conduct, defer, or suspend; and ( 4 ) the scope of those registries. T he report may also include a description of the activities the Secretary underta k es to establish partnerships with research and patient advocacy communities to expand registries. Approved O ctober 8, 2 0 08.
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