Page:United States Statutes at Large Volume 114 Part 2.djvu/285

 PUBLIC LAW 106-310—OCT. 17, 2000 114 STAT. 1167 "(F) members of the public having special expertise about or concern with heritable disorders; and "(G) representatives from such Federal agencies, public health constituencies, and medical professional societies as determined to be necessary by the Secretary, to fulfill the duties of the Advisory Committee, as established under subsection (b).". TITLE XXVII—PEDIATRIC RESEARCH PROTECTIONS SEC. 2701. REQUIREMENT FOR ADDITIONAL PROTECTIONS FOR CHIL- 42 USC 289 note. DREN INVOLVED IN RESEARCH. Notwithstanding any other provision of law, not later than 6 months after the date of the enactment of this Act, the Secretary of Health and Human Services shall require that all research involving children that is conducted, supported, or regulated by the Department of Health and Human Services be in compliance with subpart D of part 46 of title 45, Code of Federal Regulations. TITLE XXVIII—MISCELLANEOUS PROVISIONS SEC. 2801. REPORT REGARDING RESEARCH ON RARE DISEASES IN Deadline. CHILDREN. Not later than 180 days after the date of the enactment of this Act, the Director of the National Institutes of Health shall submit to the Congress a report on— (1) the activities that, during fiscal year 2000, were conducted and supported by such Institutes with respect to rare diseases in children, including Friedreich's ataxia and Hutchinson-Gilford progeria syndrome; and (2) the activities that are planned to be conducted and supported by such Institutes with respect to such diseases during the fiscal years 2001 through 2005. SEC. 2802. STUDY ON METABOLIC DISORDERS. 42 USC 285c (a) IN GENERAL. —The Secretary of Health and Human Services (in this section referred to as the "Secretary) shall, in consultation with relevant experts or through the Institute of Medicine, study issues related to treatment of PKU and other metabolic disorders for children, adolescents, and adults, and mechanisms to assure access to effective treatment, including special diets, for children and others with PKU and other metabolic disorders. Such mechanisms shall be evidence-based and reflect the best scientific knowledge regarding effective treatment and prevention of disease progression. (b) DISSEMINATION OF RESULTS. — Upon completion of the study referred to in subsection (a), the Secretary shall disseminate and otherwise make available the results of the study to interested groups and organizations, including insurance commissioners, employers, private insurers, health care professionals. State and local public health agencies, and State agencies that carry out the Medicaid program under title XIX of the Social Security Act

�