text: SECTION 1. SHORT TITLE.
  
      This Act may be cited as the ``National MS and Parkinson's Disease 
  Registries Act''.
  
  SEC. 2. FINDINGS.
  
      Congress makes the following findings:
              (1) Multiple sclerosis (referred to in this section as 
          ``MS'') is a progressive, disabling disease that affects the 
          brain and the spinal cord causing loss of myelin, damage to 
          axons, and cerebral atrophy.
              (2) MS is a prime-of-life disease with an average age of 
          onset at 30 to 35 years of age.
              (3) More than 10,000 individuals in the United States are 
          diagnosed with MS annually, and it is thought that more than 
          400,000 individuals in the United States have MS.
              (4) Parkinson's disease is a chronic, progressive 
          neurological disease. The primary pathologic feature of 
          Parkinson's disease is degeneration and premature death of 
          dopamine-producing brain cells.
              (5) Parkinson's is the second-most common neurodegenerative 
          disease in the United States.
              (6) It is estimated that more than 1,000,000 Americans are 
          currently fighting Parkinson's disease, and 60,000 Americans 
          are newly diagnosed every year.
              (7) Although estimates exist, there is no confirmed data 
          regarding prevalence or diagnosed cases of Parkinson's disease 
          or MS.
              (8) The causes of Parkinson's disease and MS are not well 
          understood.
              (9) There is no known cure for Parkinson's disease or MS.
              (10) Studies have found relationships between both MS and 
          Parkinson's disease and environmental and genetic factors, but 
          those relationships are not well understood.
              (11) Better data are needed to understand the economic 
          impact of Parkinson's disease, MS, and other neurological 
          diseases.
              (12) There are several drugs currently approved by the Food 
          and Drug Administration for the treatment of MS, which have 
          shown modest success in reducing relapses, slowing progression 
          of disability, and limiting the accumulation of brain lesions.
              (13) Currently, state-of-the-art treatment for Parkinson's 
          disease is based on a 40-year-old pharmaceutical therapy, which 
          only treats some of the motor symptoms of Parkinson's disease. 
          Deep brain stimulation surgery is available for certain 
          patients and treats some symptoms of Parkinson's disease.
              (14) No therapies exist that will slow or stop progression 
          of Parkinson's disease. There is no effective, lasting therapy 
          for all features of Parkinson's disease.
              (15) Central nervous system drugs, including therapies for 
          MS, Parkinson's disease, and other neurological diseases, are 
          the slowest in the drug development pipeline, taking an average 
          of 15 years post discovery for new therapies to reach the 
          market.
              (16) Several small and uncoordinated MS and Parkinson's 
          disease registries, surveillance systems, and databases exist 
          in the United States and throughout the world.
              (17) A single national system to collect and store 
          information on the incidence and prevalence of MS, Parkinson's 
          disease, or other neurological diseases in the United States 
          does not exist.
              (18) The Agency for Toxic Substances and Disease Registry 
          (ATSDR) has established a series of small pilot studies, 
          beginning in fiscal year 2006, to evaluate the feasibility of 
          various methodologies to create an MS surveillance system at 
          the national level.
              (19) The national surveillance system methodology resulting 
          from the MS pilot studies should be expanded upon and developed 
          into a national surveillance system for Parkinson's disease.
              (20) The establishment of separate, coordinated national 
          surveillance systems for Parkinson's disease and MS will help--
                      (A) to identify the incidence and prevalence of 
                  these diseases in the United States;
                      (B) to collect demographic and other data important 
                  to the study of MS and Parkinson's disease;
                      (C) to produce epidemiologically sound data that 
                  can be used to compare with cluster information, data 
                  sets of the Department of Veterans Affairs, 
                  environmental exposure data, and other information;
                      (D) to promote a better understanding of causes, 
                  prevention, and treatment of disease;
                      (E) to better understand public and private 
                  resource impact;
                      (F) to collect information that is important for 
                  research into genetic and environmental risk factors;
                      (G) to enhance biomedical and clinical research by 
                  providing a basis for population comparisons;
                      (H) to enhance efforts to develop better diagnosis 
                  and progression biomarkers for MS and Parkinson's 
                  disease; and
                      (I) to enhance efforts to find treatments and a 
                  cure for MS and Parkinson's disease.
  
  SEC. 3. SURVEILLANCE SYSTEMS.
  
      Part P of title III of the Public Health Service Act (42 U.S.C. 
  280g et seq.) is amended--
              (1) by redesignating the second and third sections 399R 
          (added by section 2 of Public Law 110-373 and section 3 of 
          Public Law 110-374) as sections 399S and 399T, respectively; 
          and
              (2) by adding at the end the following:
  
  ``SEC. 399U. SURVEILLANCE OF NEUROLOGICAL DISEASES.
  
      ``(a) Multiple Sclerosis National Surveillance System.--
              ``(1) In general.--Not later than 1 year after receipt of 
          the report described in subsection (c)(3), the Secretary, 
          acting through the Director of the Agency for Toxic Substances 
          and Disease Registry and in consultation with a national 
          voluntary health organization with experience serving the 
          population of individuals with multiple sclerosis (referred to 
          in this section as `MS'), shall--
                      ``(A) develop a system to collect data on MS 
                  including information with respect to the incidence and 
                  prevalence of the disease in the United States;
                      ``(B) establish a national surveillance system for 
                  the collection and storage of such data to include a 
                  population-based registry of cases of MS in the United 
                  States;
                      ``(C) assist in application of MS national 
                  surveillance system methodologies for the development, 
                  piloting, and implementation of a national Parkinson's 
                  disease national surveillance system under subsection 
                  (b); and
                      ``(D) provide analysis regarding expansion of 
                  national disease surveillance systems for other 
                  neurological diseases and disorders utilizing the MS 
                  and Parkinson's disease national surveillance systems' 
                  process and structure.
              ``(2) Purpose.--It is the purpose of the registry 
          established under paragraph (1)(B) to gather available data 
          concerning--
                      ``(A) MS, including the incidence and prevalence of 
                  MS in the United States;
                      ``(B) the age, race or ethnicity, gender, military 
                  service if applicable, and family history of 
                  individuals who are diagnosed with the disease; and
                      ``(C) other matters as recommended by the Advisory 
                  Committee established pursuant to subsection (c).
      ``(b) Parkinson's Disease National Surveillance System.--
              ``(1) In general.--Not later than 1 year after the receipt 
          of the report described in subsection (c)(3), the Secretary, 
          acting through the Director of the Agency for Toxic Substances 
          and Disease Registry and in consultation with a national 
          voluntary health organization with experience serving the 
          population of individuals with Parkinson's disease, shall--
                      ``(A) develop a system to collect data on 
                  Parkinson's disease including information with respect 
                  to the incidence and prevalence of the disease in the 
                  United States;
                      ``(B) establish a national surveillance system for 
                  the collection and storage of such data to include a 
                  population-based registry of cases of Parkinson's 
                  disease in the United States; and
                      ``(C) provide analysis regarding expansion of 
                  national disease surveillance systems for other 
                  neurological diseases utilizing the MS and Parkinson's 
                  disease national surveillance systems' process and 
                  structure.
              ``(2) Purpose.--It is the purpose of the registry 
          established under paragraph (1)(B) to gather available data 
          concerning--
                      ``(A) Parkinson's disease, including the incidence 
                  and prevalence of Parkinson's disease in the United 
                  States;
                      ``(B) the age, race or ethnicity, gender, military 
                  service if applicable, and family history of 
                  individuals who are diagnosed with the disease; and
                      ``(C) other matters as recommended by the Advisory 
                  Committee established pursuant to subsection (c).
      ``(c) Advisory Committee.--
              ``(1) Establishment.--Not later than 180 days after the 
          date of the enactment of this section, the Secretary, acting 
          through the Director of the Agency for Toxic Substances and 
          Disease Registry, shall establish a committee to be known as 
          the Advisory Committee on Neurological Disease Registries 
          (referred to in this section as the `Advisory Committee'). The 
          Advisory Committee shall be composed of at least one member, to 
          be appointed by the Secretary, acting through the Director of 
          the Agency for Toxic Substances and Disease Registry, 
          representing each of the following:
                      ``(A) National voluntary health associations that 
                  focus solely on MS and have demonstrated experience in 
                  MS research, care, or patient services.
                      ``(B) National voluntary health associations that 
                  focus solely on Parkinson's disease and have 
                  demonstrated experience in Parkinson's disease public 
                  policy, research, care, or patient services.
                      ``(C) The National Institutes of Health, to 
                  include, upon the recommendation of the Director of the 
                  National Institutes of Health, representatives from the 
                  Office of Portfolio Analysis and Strategic Initiatives, 
                  the National Institute of Neurological Disorders and 
                  Stroke, the National Institute of Environmental Health 
                  Sciences, the National Institute on Aging, and the 
                  National Institute of Allergy and Infectious Diseases.
                      ``(D) The Department of Veterans Affairs, to 
                  include representatives from the Parkinson's Disease 
                  Research Education and Clinical Centers and the MS 
                  Centers of Excellence.
                      ``(E) The Department of Defense, to include 
                  representatives from the Parkinson's disease and MS 
                  research programs.
                      ``(F) The Food and Drug Administration.
                      ``(G) The Centers for Disease Control and 
                  Prevention, to include representatives from the Agency 
                  for Toxic Substances and Disease Registry.
                      ``(H) Patients with MS and Parkinson's disease or 
                  their family members.
                      ``(I) Clinicians with expertise on MS and 
                  Parkinson's disease.
                      ``(J) Research scientists with experience 
                  conducting translational research or creating systems 
                  that support translating basic discoveries into 
                  treatments.
                      ``(K) Epidemiologists with experience in data 
                  registries.
                      ``(L) Geneticists or experts in genetics who have 
                  experience with the genetics of MS and Parkinson's 
                  disease.
                      ``(M) Statisticians.
                      ``(N) Bioethicists.
                      ``(O) Attorneys.
                      ``(P) Other individuals, organizations, or agencies 
                  with an interest in developing and maintaining the MS 
                  and Parkinson's disease national surveillance systems.
                      ``(Q) Experts in additional neurological diseases, 
                  as appropriate, based on development and implementation 
                  of national surveillance systems for other neurological 
                  diseases and disorders.
              ``(2) Duties.--The Advisory Committee shall review 
          information and make recommendations to the Secretary 
          concerning--
                      ``(A) the development and maintenance of the MS and 
                  Parkinson's disease national surveillance systems;
                      ``(B) the use and coordination of existing 
                  databases that collect or maintain information on 
                  neurological diseases and disorders;
                      ``(C) the type of information to be collected and 
                  stored in the systems;
                      ``(D) the manner in which such data is to be 
                  collected;
                      ``(E) the use and availability of such data 
                  including guidelines for such use; and
                      ``(F) the application of MS and Parkinson's disease 
                  registry methodologies to benefit other neurological 
                  diseases and disorders, including analysis of how other 
                  neurological disease surveillance systems or registries 
                  can be developed, piloted, and implemented nationally 
                  utilizing the MS and Parkinson's disease national 
                  surveillance systems' process and structure.
              ``(3) Report.--Not later than 1 year after the date on 
          which the Advisory Committee is established, the Advisory 
          Committee shall submit a report to Congress concerning the 
          review conducted under paragraph (2) that contains the 
          recommendations of the Advisory Committee with respect to the 
          results of such review.
      ``(d) Grants.--Notwithstanding the recommendations of the Advisory 
  Committee under subsection (c), the Secretary, acting through the 
  Director of the Agency for Toxic Substances and Disease Registry, 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 MS and Parkinson's disease.
      ``(e) Coordination With State, Local, and Federal Registries.--
              ``(1) In general.--In establishing the MS and Parkinson's 
          disease national surveillance systems under subsections (a) and 
          (b), the Secretary, acting through the Director of the Agency 
          for Toxic Substances and Disease Registry, shall--
                      ``(A) identify, build upon, expand, and coordinate 
                  existing data and surveillance systems, surveys, 
                  registries, and other Federal public health and 
                  environmental infrastructure wherever possible, 
                  including--
                              ``(i) the 2 MS surveillance pilot studies 
                          initiated in fiscal year 2006 by the Centers 
                          for Disease Control and Prevention and the 
                          Agency for Toxic Substances and Disease 
                          Registry;
                              ``(ii) the Parkinson's disease and MS 
                          databases of the Department of Veterans 
                          Affairs;
                              ``(iii) current Parkinson's disease 
                          registries and surveillance systems, including 
                          the Nebraska and California State registries;
                              ``(iv) current MS registries, including the 
                          New York State MS Registry and the North 
                          American Research Committee on MS (NARCOMS) 
                          Registry; and
                              ``(v) any other existing or relevant 
                          databases that collect or maintain information 
                          on neurological diseases and disorders 
                          identified by researchers or recommended by the 
                          Advisory Committee pursuant to subsection (c); 
                          and
                      ``(B) provide for and conduct outreach in support 
                  of research access to Parkinson's disease and MS data 
                  as recommended by the Advisory Committee established 
                  pursuant to subsection (c) to the extent permitted by 
                  applicable statutes and regulations and in a manner 
                  that protects personal privacy consistent with 
                  applicable privacy statutes and regulations.
              ``(2) Coordination with other federal agencies.--
          Notwithstanding the recommendations of the Advisory Committee 
          established pursuant to subsection (c), and consistent with 
          applicable privacy statutes and regulations, the Secretary 
          shall ensure that epidemiological and other types of 
          information obtained under subsections (a) and (b) are made 
          available to agencies such as the National Institutes of 
          Health, the Food and Drug Administration, the Department of 
          Veterans Affairs, and the Department of Defense.
      ``(f) Definition.--For the purposes of this section, the term 
  `national voluntary health association' means a national nonprofit 
  organization with chapters, other affiliated organizations, or networks 
  in States throughout the United States.
      ``(g) Authorization of Appropriations.--There is authorized to be 
  appropriated to carry out this section $5,000,000 for each of fiscal 
  years 2010 through 2014.''.
target: National MS and Parkinson's Disease Registries Act - Amends the Public Health Service Act to require the Secretary of Health and Human Services (HHS) , acting through the Director of the Agency for Toxic Substances and Disease Registry, to: (1) develop a system to collect data on multiple sclerosis (MS) and a system to collect data on Parkinson's disease; (2) establish a national surveillance system for the collection and storage of data for each such disease, including population-based registries of U.S. cases of MS and Parkinson's disease; (3) provide analysis regarding expansion of national disease surveillance systems for other neurological diseases and disorders; and (4) establish the Advisory Committee on Neurological Disease Registries.
  
  Allows the Secretary, acting through the Director, to provide for the collection, analysis, and reporting of data on MS and Parkinson's disease.
  
  Requires the Secretary, acting through the Director, to: (1) identify, build upon, expand, and coordinate existing data and surveillance systems, surveys, registries, and other federal public health and environmental infrastructure wherever possible; and (2) provide for research access to Parkinson's disease and MS data.
  
  Requires the Secretary to ensure that epidemiological and other types of information collected are made available to agencies such as the National Institutes of Health (NIH), the Food and Drug Administration (FDA), the Department of Veterans Affairs (VA), and the Department of Defense (DOD).
feat_title: A bill to amend the Public health Service Act to provide for the establishment of permanent national surveillance systems for multiple sclerosis, Parkinson's disease, and other neurological diseases and disorders.