H.R.2149 - SMA Treatment Acceleration Act of 2009111th Congress (2009-2010)
Summary: H.R.2149 — 111th Congress (2009-2010)
Introduced in House (04/28/2009)
SMA Treatment Acceleration Act of 2009 - Amends the Public Health Service Act to require the Director of the National Institutes of Health (NIH) to establish a national clinical trials network for spinal muscular atrophy by upgrading and unifying spinal muscular atrophy clinical trial sites and recruiting new investigators and sites. Requires the Director to ensure that such network: (1) conducts coordinated, multisite, clinical trials of therapies and clinical approaches to the treatment of spinal muscular atrophy; and (2) rapidly and efficiently disseminates scientific findings to the field.
Requires the Director to: (1) establish a data coordinating center with respect to spinal muscular atrophy; and (2) expand and intensify NIH programs with respect to preclinical translation research related to spinal muscular atrophy.
Requires the Secretary of Health and Human Services, acting through the Director of the Centers for Disease Control and Prevention (CDC), to enhance and support a spinal muscular atrophy patient registry to provide for expanded epidemiological research towards improving awareness, management, treatment, and prevention of spinal muscular atrophy. Requires the Secretary to ensure the collection and analysis of longitudinal data related to individuals of all ages.
Directs the Secretary to establish the Interagency Spinal Muscular Atrophy Research Coordinating Committee. Sets forth the duties of the Committee, including to develop a comprehensive strategy related to spinal muscular atrophy research and other related neurological diseases and disorders.
Requires the Secretary to establish a program to provide information and education on spinal muscular atrophy to health professionals and the general public.