Sec. 2. Authorization to fund research of the long-term symptoms of COVID–19 by the Patient-Centered Outcomes Research Trust Fund
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The Patient-Centered Outcomes Research Trust Fund under section 1181 of the Social Security Act ( 42 U.S.C. 1320e(b) ) shall fund activities described in subsection
(b)to improve treatment and outcomes for individuals with PASC. For purposes of subsection (a), activities described in this subsection shall include— prior to creating a patient registry described in paragraph (2)— surveying existing patient registries that include individuals experiencing PASC and other relevant chronic disease or health registries; and identifying common data elements and definitions for use, in order to promote appropriate data sharing for ongoing and future research; creating a patient registry, informed by the survey described in paragraph (1), for individuals with suspected or confirmed PASC and related post-viral illnesses or conditions— with information that is culturally and linguistically appropriate and easily accessible to people with disabilities, and which may include— symptoms that arise while an individual is initially infected with COVID–19 and that may resolve over time or extend beyond the resolution of the initial symptoms; persistent symptoms that arise after an individual is initially infected with COVID–19 and that the clinician of such individual has reason to suspect were related to the COVID–19 diagnosis; symptoms that arise in an individual that may be related to COVID–19 but a diagnosis of COVID–19 was not obtained and cannot be identified due to a lack of antibodies, false negative test results, or lack of access to timely testing; treatments of individuals after primary diagnosis of COVID–19 and the effectiveness of such treatments; and any other relevant questions or issues related to individuals who experience a diagnosis of, treatment for, and management of care with COVID–19, PASC, or related post-viral illnesses; that collects information regarding co-morbidities, vaccination status, and demographics, including age, gender, race and ethnicity, geographic location, disability, and occupation of registry participants; that synthesizes information relating to individuals experiencing PASC or related post-viral illnesses or conditions from the survey described in paragraph
(1)and other information available through the patient registry; and that disseminates information to relevant Federal departments and agencies and patients participating in the registry to inform treatment and policy related to COVID–19, PASC, or related post-viral illnesses and conditions; and outreach to, and inclusion (as appropriate) of, individuals, including children and older adults, from communities impacted by high COVID–19 rates, communities affected by health disparities and inequities, including Indian Tribes and Tribal organizations, urban Indian organizations, people with disabilities, individuals with related post-viral illnesses or conditions, health care providers, first responders, and frontline workers who may be impacted by high COVID–19 rates, and health care providers from diverse disciplines that may treat individuals with COVID–19, PASC, or related post-viral illnesses and conditions. Participation in the registry described in subsection (b)(2) shall be voluntary and personal and health information of participants, including information voluntarily submitted through the registry, shall be subject to all applicable privacy protections under Federal or State law. Not later than 1 year after the establishment of the synthesized patient registry under subsection (b)(2), and annually thereafter, the Patient-Centered Outcomes Research Institute shall submit data, findings, and information with respect to the status of the patient registry (including progress, barriers, and issues) to Congress and the President. To carry out this section, there is authorized to be appropriated $30,000,000 for fiscal year 2023, which shall remain available until expended.
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Sec. 2
Authorization to fund research of the long-term symptoms of COVID–19 by the Patient-Centered Outcomes Research Trust Fund
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