FDA+ roundup: ALS bill would pro­vide $100M an­nu­al­ly to ac­cess po­ten­tial drugs; FDA needs to bet­ter en­force Clin­i­cal­Tri­als.gov re­port­ing, re­searchers say

The House En­er­gy & Com­merce Com­mit­tee be­gan mark­ing up a dozen bills on Wednes­day morn­ing in­clud­ing one that would re­quire the FDA to craft a five-year ac­tion plan for fos­ter­ing the de­vel­op­ment of drugs that im­prove or ex­tend the lives of peo­ple liv­ing with rare neu­rode­gen­er­a­tive dis­eases.

Rare neu­rode­gen­er­a­tive dis­eases, like amy­otroph­ic lat­er­al scle­ro­sis or ALS, have been his­tor­i­cal­ly very dif­fi­cult to treat. But this bi­par­ti­san bill, in­tro­duced by Rep. Mike Quigley (D-IL), will pro­vide $100 mil­lion for each of fis­cal years 2022 through 2026 to help HHS award grants to fa­cil­i­tate ac­cess to in­ves­ti­ga­tion­al drugs that di­ag­nose or treat ALS.

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