Page:United States Statutes at Large Volume 112 Part 1.djvu/661

 PUBLIC LAW 105-196-^ULY 16, 1998 112 STAT. 635 "(B) POSTSEARCH FUNCTIONS. — In addition to the case management services described in paragraph (1) for patients, the Office may, on behalf of patients who have completed the search for an unrelated donor, provide information and education on the process of receiving a transplant of bone marrow, including the posttransplant process.". (e) CRITERIA, STANDARDS, AND PROCEDURES.— Section 379(e) of the Public Health Service Act (42 U.S.C. 274k), as redesignated by subsection (c) of this section, is amended by striking paragraph (4) and inserting the following: "(4) standards for the system for patient advocacy operated under subsection (d), including standards requiring the provision of appropriate information (at the start of the search process and throughout the process) to patients and their families and physicians;". (f) REPORT. —Section 379 of the Public Health Service Act, as amended by subsection (c) of this section, is amended by adding at the end the following subsection: "(1) ANNUAL REPORT REGARDING PRETRANSPLANT COSTS. —The Registry shall annually submit to the Secretary the data collected under subsection (b)(7) on comparisons of transplant centers regarding search and other costs that prior to transplantation are charged to patients by transplant centers. The data shall be submitted to the Secretary through inclusion in the annual report required in section 379A(c).". (g) CONFORMING AMENDMENTS. —Section 379 of the Public Health Service Act, as amended by subsection (c) of this section, is amended— (1) in subsection (f), by striking "subsection (c)" and inserting "subsection (e)"; and (2) in subsection (k), by striking "subsection (c)(5)(A)" and inserting "subsection (e)(5)(A)" and by striking "subsection (c)(5)(B)" and inserting "subsection (e)(5)(B)". SEC. 3. RECIPIENT REGISTRY. Part I of title III of the Public Health Service Act (42 U.S.C. 274k et seq.) is amended by striking section 379A and inserting the following: "SEC. 379A. BONE MARROW SCIENTIFIC REGISTRY. 42 USC 274/. "(a) ESTABLISHMENT OF RECIPIENT REGISTRY.— The Secretary, acting through the Registry under section 379 (in this section referred to as the 'Registry'), shall establish and maintain a scientific registry of information relating to patients who have been recipients of a transplant of bone marrow from a biologically unrelated donor. "(b) INFORMATION.— The scientific registry under subsection (a) shall include information with respect to patients described in subsection (a), transplant procedures, and such other information as the Secretary determines to be appropriate to conduct an ongoing evaluation of the scientific and clinical status of transplantation involving recipients of bone marrow from biologically unrelated donors. " (c) ANNUAL REPORT ON PATIENT OUTCOMES. — The Registry shall annually submit to the Secretary a report concerning patient outcomes with respect to each transplant center. Each such report shall use data collected and maintained by the scientific registry

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