Privacy Act Statement

PRIVACY ACT STATEMENT: This Statement is provided pursuant to 5 U.S.C. § 552a(e)(3) (the Privacy Act). The National Organ Transplant Act (42 U.S.C. §§ 273 et. seq.) and the Organ Procurement and Transplantation Network (OPTN) Final Rule (42 CFR Part 121) authorize the collection of information by the OPTN. This information is distributed and used by Health Resources and Services Administration (HRSA), Centers for Medicare & Medicaid Services (CMS), the United States Department of Health and Human Services (HHS), the OPTN, the OPTN designated contractor(s), and the Scientific Registry of Transplant Recipients (SRTR) contractor(s), pursuant to System of Record Notice (SORN) 09-15-0055. The primary purposes of this information are to facilitate organ placement and match donor organs with recipients, to monitor compliance of member organizations with federal laws, regulations, and OPTN requirements, to review and report on the status of organ donation and transplantation in the United States, and to provide data to researchers, government agencies, and health care professionals providing clinical care. Additional purposes include monitoring an individual's status in the OPTN system and informing the individual's clinical care team to assist in registering candidates on the waitlist, facilitating organ placement, and matching donor organs with recipients. Routine uses of this information include, among others: (1) to assist in accomplishment of a Departmental functions for purposes of the SORN; (2) for the operation of the OPTN; (3) for public health surveillance; (4) for the Department of Justice or a court to use in defending litigation; (5) for a congressional office upon the request of the individual concerning records pertaining to him/her; (6) for research purposes, if certain requirements are satisfied and data use agreements are executed; and (7) for physicians or health care professionals providing clinical treatment, if certain requirements are satisfied and data use agreements are executed. Furnishing information as described above may be pursuant to laws and regulations governing organ procurement organizations and transplant hospitals. Failure to submit such information may result in enforcement actions resulting from non-compliance with OPTN requirements. For a complete list of routine uses, see SORN 09-15-0055.