Page:United States Statutes at Large Volume 112 Part 1.djvu/660

 112 STAT. 634 PUBLIC LAW 105-196—JULY 16, 1998 donor advocacy, and which shall serve patients for whom the Registry is conducting, or has been requested to conduct, a search for an unrelated donor of bone marrow. "(C) In the case of such a patient, the Office shall serve as an advocate for the patient by directly providing to the patient (or family members, physicians, or other individuals acting on behalf of the patient) individualized services with respect to efficiently utilizing the system under subsection (b)(1) to conduct an ongoing search for a donor. "(D) In carrying out subparagraph (C), the Office shall monitor the system under subsection (b)(1) to determine whether the search needs of the patient involved are being met, including with respect to the following: "(i) Periodically providing to the patient (or an individual acting on behalf of the patient) information regarding donors who are suitability matched to the patient, and other information regarding the progress being made in the search. "(ii) Informing the patient (or such other individual) if the search has been interrupted or discontinued. "(iii) Identifying and resolving problems in the search, to the extent practicable. "(E) In carrying out subparagraph (C), the Office shall monitor the system under subsection (b)(1) to determine whether the Registry, donor centers, transplant centers, and other entities participating in the Registry program are complying with standards issued under subsection (e)(4) for the system for patient advocacy under this subsection. "(F) The Office shall ensure that the following data are made available to patients: "(i) The resources available through the Registry. "(ii) A comparison of transplant centers regarding search and other costs that prior to transplantation are charged to patients by transplant centers. "(iii) A list of donor registries, transplant centers, and other entities that meet the applicable standards, criteria, and procedures under subsection (e). "(iv) The posttransplant outcomes for individual transplant centers. "(v) Such other information as the Registry determines to be appropriate. "(G) The Office shall conduct surveys of patients (or family members, physicians, or other individuals acting on behalf of patients) to determine the extent of satisfaction with the system for patient advocacy under this subsection, and to identify ways in which the system can be improved. " (3) CASE MANAGEMENT. — "(A) IN GENERAL.—In serving as an advocate for a patient under paragraph (2), the Office shall provide individualized case management services directly to the patient (or family members, physicians, or other individuals acting on behalf of the patient), including— "(i) individualized case assessment; and "(ii) the functions described in paragraph (2)(D) (relating to progress in the search process).

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