text: SECTION 1. SHORT TITLE.
  
      This Act may be cited as the ``SMA Treatment Acceleration Act of 
  2009''.
  
  SEC. 2. CLINICAL TRIALS NETWORK FOR SPINAL MUSCULAR ATROPHY.
  
      Part B of title IV of the Public Health Service Act is amended by 
  adding at the end the following new section:
  
  ``SEC. 409J. CLINICAL TRIALS NETWORK FOR SPINAL MUSCULAR ATROPHY.
  
      ``(a) Clinical Trials Network.--The Director of NIH, in 
  coordination with the Directors of the National Institute of 
  Neurological Disorders and Stroke, the National Institute of Child 
  Health and Human Development, and such other Institutes and Centers as 
  specified by the Director shall provide for the upgrading and 
  unification of spinal muscular atrophy clinical trial sites and the 
  recruitment of new investigators and sites to establish a national 
  clinical trials network for spinal muscular atrophy. The Director of 
  NIH shall 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.
      ``(b) Data Coordinating Center.--The Director of NIH, in 
  coordination with the Commissioner of Food and Drugs and the Directors 
  of the National Institute of Neurological Disorders and Stroke, the 
  National Institute of Child Health and Human Development, and such 
  other Institutes and Centers as specified by the Director, shall 
  establish a data coordinating center with respect to spinal muscular 
  atrophy to--
              ``(1) provide expert assistance in the design, conduct, 
          data analysis, data management, and data warehousing of 
          collaborative clinical and descriptive research projects;
              ``(2) organize and conduct multi-site monitoring 
          activities;
              ``(3) provide regular reports to the National Institute of 
          Neurological Disorders and Stroke, the National Institute of 
          Child Health and Human Development, such other Institutes and 
          Centers as specified by the Director, and the Food and Drug 
          Administration on enrollment and the allocation of resources; 
          and
              ``(4) conduct such other activities as are deemed necessary 
          by the Secretary.
      ``(c) Pre-Clinical Activities.--The Director of NIH, in 
  coordination with the Directors of the National Institute of 
  Neurological Disorders and Stroke and the National Institute of Child 
  Health and Human Development, shall expand and intensify programs of 
  such Institutes with respect to pre-clinical translation research 
  related to spinal muscular atrophy.''.
  
  SEC. 3. NATIONAL PATIENT REGISTRY.
  
      Part P of title III of the Public Health Service Act is amended by 
  adding at the end the following new section:
  
  ``SEC. 399S. NATIONAL SPINAL MUSCULAR ATROPHY PATIENT REGISTRY.
  
      ``(a) In General.--The Secretary, acting through the Director of 
  the Centers for Disease Control and Prevention and in coordination with 
  the Director of the NIH, shall enhance and provide ongoing support to a 
  spinal muscular atrophy patient registry to provide for expanded 
  epidemiological research towards improving awareness, management, 
  treatment, and prevention of spinal muscular atrophy.
      ``(b) Longitudinal Data.--In carrying out subsection (a), the 
  Secretary shall ensure the collection and analysis of longitudinal data 
  related to individuals of all ages with spinal muscular atrophy, 
  including infants, young children, adolescents, and adults of all 
  ages.''.
  
  SEC. 4. INTERAGENCY SPINAL MUSCULAR ATROPHY RESEARCH COORDINATING 
                COMMITTEE.
  
      Part B of title IV of the Public Health Service Act, as amended by 
  section 2, is further amended by adding at the end the following new 
  section:
  
  ``SEC. 409K. INTERAGENCY SPINAL MUSCULAR ATROPHY RESEARCH COORDINATING 
                COMMITTEE.
  
      ``(a) Establishment.--Not later than 6 months after the date of the 
  enactment of this section, the Secretary shall establish a committee, 
  to be known as the Interagency Spinal Muscular Atrophy Research 
  Coordinating Committee (in this section referred to as the 
  `Committee').
      ``(b) Duties.--The Committee shall--
              ``(1) share and coordinate information on existing research 
          activities, and make recommendations to the National Institutes 
          of Health and other Federal agencies regarding how to improve 
          existing research programs, that are related to spinal muscular 
          atrophy research and other related neurological diseases and 
          disorders;
              ``(2) develop a comprehensive strategy related to spinal 
          muscular atrophy research and other related neurological 
          diseases and disorders and advise the National Institutes of 
          Health and other Federal agencies, expanding proposals for 
          collaborative, multidisciplinary research, including proposals 
          for Common Fund research described in section 402(b)(7) and 
          other proposals that involve collaboration between 2 or more 
          national research institutes or national centers;
              ``(3) provide annual reports to the Secretary regarding the 
          National Institutes of Health and other Federal agencies' 
          collaborative multidisciplinary research efforts to support 
          spinal muscular atrophy, including the Spinal Muscular Atrophy 
          Project at the National Institute of Neurological Disorders and 
          Stroke, the ongoing and future research needs to advance 
          therapies for spinal muscular atrophy, and recommendations on 
          how to strengthen the collaboration of research activities by 
          the institutes and agencies to improve the results;
              ``(4) develop a summary of advances in research related to 
          spinal muscular atrophy research and other related neurological 
          diseases and disorders research supported or conducted by 
          Federal agencies; and
              ``(5) not later than 1 year after the date of the 
          establishment of the Committee, make recommendations to the 
          Secretary--
                      ``(A) regarding any appropriate changes to research 
                  activities, including recommendations to improve the 
                  research portfolio of the National Institutes of Health 
                  to ensure that scientifically-based strategic planning 
                  is implemented in support of research priorities that 
                  impact research activities related to spinal muscular 
                  atrophy and other related neurological diseases and 
                  disorders;
                      ``(B) identifying barriers to the development of 
                  new treatments and cures for spinal muscular atrophy 
                  and other related neurological diseases and disorders;
                      ``(C) regarding public participation in decisions 
                  relating to spinal muscular atrophy research and other 
                  related neurological diseases and disorders to increase 
                  the involvement of patient advocacy and community 
                  organizations representing a broad geographical area;
                      ``(D) on how best to disseminate information on 
                  spinal muscular atrophy progress; and
                      ``(E) on how to expand partnerships between public 
                  entities, including Federal agencies, and private 
                  entities to expand collaborative, cross-cutting 
                  research.
      ``(c) Rule of Construction.--In carrying out the duties described 
  in subsection (b) with respect to research on spinal muscular atrophy, 
  nothing in this section shall be construed to restrict the Secretary 
  from including other neurological or genetic disorders, as appropriate, 
  in such research if doing so may advance research in spinal muscular 
  atrophy or other related neurological diseases and disorders.
      ``(d) Membership.--
              ``(1) In general.--The Committee shall be composed of the 
          following voting members:
                      ``(A) Not more than 11 voting Federal 
                  representatives as follows:
                              ``(i) The Director of the Centers for 
                          Disease Control and Prevention.
                              ``(ii) The Director of the National 
                          Institutes of Health and the directors of such 
                          national research institutes and national 
                          centers (which shall include the National 
                          Institute of Neurological Disorders and Stroke, 
                          the National Institute of Child Health and 
                          Human Development, and the National Center for 
                          Research Resources) as the Secretary determines 
                          appropriate.
                              ``(iii) The Commissioner of Food and Drugs.
                              ``(iv) The heads of such other agencies and 
                          advisory committees as the Secretary determines 
                          appropriate, including the Health Resources and 
                          Services Administration, the Agency for 
                          Healthcare Research and Quality, and the 
                          Advisory Committee on Heritable Disorders and 
                          Genetic Diseases in Newborns and Children.
                              ``(v) Representatives of other Federal 
                          agencies that conduct or support neurological 
                          research, or provide support services and 
                          resources for individuals with spinal muscular 
                          atrophy, such as the Department of Education 
                          and the Social Security Administration.
                      ``(B) 9 additional voting members appointed under 
                  paragraph (2).
              ``(2) Additional members.--The Committee shall include 
          additional voting members appointed by the Secretary as 
          follows:
                      ``(A) 6 members shall be appointed from among 
                  scientists, physicians, and other health professionals, 
                  who--
                              ``(i) are not officers or employees of the 
                          United States;
                              ``(ii) represent multiple disciplines, 
                          including clinical, basic, and public health 
                          sciences;
                              ``(iii) represent different geographical 
                          regions of the United States;
                              ``(iv) are from practice settings, 
                          academia, or other research settings; and
                              ``(v) are experienced in scientific peer 
                          review process.
                      ``(B) 3 members shall be appointed from members of 
                  the general public, who represent individuals with 
                  spinal muscular atrophy.
              ``(3) Nonvoting members.--The Committee shall include such 
          nonvoting members as the Secretary determines to be 
          appropriate.
      ``(e) Chairperson.--The voting members of the Committee shall 
  select a chairperson from among the Federal members of the Committee 
  described in subsection (d)(1)(A). The selection of a chairperson may 
  be subject to the approval of the Secretary. The chairperson shall 
  serve for a term of not to exceed 2 years, but may be re-elected as 
  provided for in the first sentence.
      ``(f) Meetings.--The Committee shall meet at the call of the 
  chairperson of the Committee or upon the request of the Secretary, but 
  in no case less often than once each year.
      ``(g) Review.--In 2012, and biennially thereafter, the Secretary 
  shall review the necessity of the Committee.''.
  
  SEC. 5. EDUCATION AND AWARENESS ON SMA FOR HEALTH CARE PROFESSIONALS.
  
      Part P of title III of the Public Health Service Act, as amended by 
  section 3, is further amended by adding at the end the following new 
  section:
  
  ``SEC. 399T. INFORMATION AND EDUCATION ON SMA.
  
      ``The Secretary shall establish and implement a program to provide 
  information and education on spinal muscular atrophy to health 
  professionals and the general public, including information and 
  education on advances in the screening, diagnosis, and treatment of 
  spinal muscular atrophy and training and continuing education through 
  programs for scientists, physicians, medical students, and other health 
  professionals who provide care for patients with spinal muscular 
  atrophy.''.
target: 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.
feat_title: A bill to authorize the Secretary of Health and Human Services to conduct activities to rapidly advance treatments for spinal muscular atrophy, neuromuscular disease, and other pediatric diseases, and for other purposes.