text: SECTION 1. SHORT TITLE.
  
      This Act may be cited as the ``Diamond-Blackfan Anemia Research and 
  Care Act''.
  
  SEC. 2. FINDINGS.
  
      The Congress finds as follows:
              (1) Diamond-Blackfan anemia is a rare genetic bone marrow 
          failure disorder, which develops in infancy and results in 
          severe anemia due to failure to make red blood cells.
              (2) Diamond-Blackfan anemia patients have an increased risk 
          of leukemia, solid tumors, and complete bone marrow failure.
              (3) Fifty percent of patients with Diamond-Blackfan anemia 
          are born with birth defects, including abnormalities to the 
          face, head, upper arm and hand, genitourinary, and heart, and 
          21 percent of the affected patients have more than 1 defect.
              (4) Treatments for Diamond-Blackfan anemia, including the 
          use of blood transfusions and steroids such as prednisone, have 
          potential long-term side effects, including osteoporosis, iron 
          overload (because of the transfusions), and impaired growth 
          (because of the steroids).
              (5) The only cure for Diamond-Blackfan anemia is a bone 
          marrow transplant, a procedure that carries serious risks and, 
          since most patients lack an acceptable donor, is an option for 
          only about 25 percent of patients.
              (6) Because Diamond-Blackfan anemia is a genetic disorder 
          of red cell production and a cancer predisposition syndrome 
          with a high rate of congenital anomalies, the Federal 
          investment regarding Diamond-Blackfan anemia must be expanded 
          to allow the careful dissection of this disease, which will 
          provide valuable insights into the biology of blood disorders 
          and cancer predisposition and serve as an important model for 
          understanding the genetics of birth defects.
  
  SEC. 3. DIAMOND-BLACKFAN ANEMIA.
  
      (a) DBA-Related Activities of NIH.--Part A of title IV of the 
  Public Health Service Act is amended by inserting after section 404G 
  (42 U.S.C. 283i) the following:
  
                         ``diamond-blackfan anemia
  
      ``Sec. 404H. (a) In General.--The Director of NIH, in coordination 
  with the Directors of the National Heart, Lung, and Blood Institute, 
  the National Institute of Diabetes and Digestive and Kidney Diseases, 
  and the Office of Rare Diseases, shall expand and intensify research 
  and related activities of the National Institutes of Health with regard 
  to Diamond-Blackfan anemia.
      ``(b) Comprehensive Research Initiative.--
              ``(1) In general.--In carrying out this section, the 
          Director of NIH shall make grants to, or enter into contracts 
          with, public or private entities to support a comprehensive 
          research initiative to study, develop better treatments for, 
          and ultimately find a cure for Diamond-Blackfan anemia.
              ``(2) Research.--The initiative supported under this 
          subsection may include research on the following:
                      ``(A) The links of Diamond-Blackfan anemia to 
                  chronic diseases.
                      ``(B) Red cell differentiation.
                      ``(C) The pathophysiology of Diamond-Blackfan 
                  anemia.
                      ``(D) The relationship between Diamond-Blackfan 
                  anemia and predisposition to cancer.
                      ``(E) Congenital anomalies in Diamond-Blackfan 
                  anemia patients.''.
      (b) DBA-Related Activities of CDC.--Part B of title III of the 
  Public Health Service Act (42 U.S.C. 243 et seq.) is amended--
              (1) by moving section 317R so that it follows section 317Q; 
          and
              (2) by inserting after section 317R the following:
  
  ``SEC. 317S. REGISTRY AND CLINICAL CARE CENTER FOR DIAMOND-BLACKFAN 
                ANEMIA.
  
      ``(a) Registry.--The Secretary, acting through the Director of the 
  Centers for Disease Control and Prevention, shall maintain and expand 
  the Diamond-Blackfan Anemia Registry (in this section referred to as 
  the `Registry').
      ``(b) Comprehensive Clinical Care Center.--
              ``(1) Establishment.--The Secretary, acting through the 
          Director of the Centers for Disease Control and Prevention, 
          shall establish a comprehensive clinical care center for 
          Diamond-Blackfan anemia where a majority of the patients with 
          the disease are examined, treated, and tracked through the 
          Registry, by experts in the disease.
              ``(2) Duties.--The center established under this section 
          shall--
                      ``(A) gather and analyze extensive data on Diamond-
                  Blackfan anemia to be used for public, non-profit, and 
                  government research initiatives involving gene 
                  discovery, ribosomal protein function, genetics of 
                  birth defects, blood cell formation (recovery from 
                  cancer chemotherapy), cancer predisposition, red cell 
                  differentiation, and a comparison of therapeutic 
                  treatments including blood transfusion, steroids, and 
                  bone marrow transplants;
                      ``(B) provide thorough examinations of Diamond-
                  Blackfan anemia patients by experts in the disease to 
                  confirm diagnosis and provide genetic typing along with 
                  a multi-system evaluation; and
                      ``(C) provide clinical care for Diamond-Blackfan 
                  anemia.''.
target: Diamond-Blackfan Anemia Research and Care Act - Amends the Public Health Service Act to direct the Director of the National Institutes of Health, in coordination with other specified officials, to expand and intensify research and related activities of the Institute with regard to Diamond-Blackfan Anemia. States that the Director shall as part of such effort award grants to, or enter into contracts with, public or private entities to support a comprehensive research initiative.Directs the Secretary of Health and Human Services, acting through the Director of the Centers for Disease Control and Prevention, to: (1) maintain and expand the Diamond-Blackfan Anemia Registry; and (2) establish a comprehensive clinical care center for Diamond-Blackfan Anemia.
feat_title: To require increased activities by the National Institutes of Health and the Centers for Disease Control and Prevention regarding Diamond-Blackfan anemia, and for other purposes.