Sec. 2. Authorization to fund a patient registry for research on Long COVID and related conditions
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The Secretary of Health and Human Services (referred to in this Act as the Secretary ), acting in coordination with the Patient-Centered Outcomes Research Institute established 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 Long COVID and related conditions. For purposes of subsection (a), activities described in this subsection shall include— creating or maintaining a regularly updated patient registry of individuals with suspected or confirmed Long COVID and related conditions, including information on— 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; any other relevant questions or issues related to individuals who experience a diagnosis of, treatment for, and management of care with COVID–19, Long COVID, and related conditions; and comorbidities, vaccination status, and demographics, including age, gender, race and ethnicity, geographic location, disability, and occupation of registry participants; synthesis of information relating to individuals experiencing Long COVID and related conditions and other information available through the patient registry; dissemination of information to relevant Federal departments and agencies and patients participating in the registry to inform treatment and policy related to COVID–19, Long COVID, and related conditions; an assurance that the registry utilizes common data elements and definitions for use in order to promote appropriate data sharing for ongoing and future research; and outreach to, and inclusion in the patient registry, as appropriate, of individuals, including children and older adults, from communities impacted by high COVID–19 and Long COVID rates, communities affected by health disparities and inequities (including Indian Tribes and Tribal organizations, urban Indian organizations, and people with disabilities), individuals with related conditions, health care providers, first responders, military service members, veterans, pregnant and lactating women, frontline workers who may be impacted by high COVID–19 and Long COVID rates, and health care providers from diverse disciplines that may treat individuals with COVID–19, Long COVID, and related conditions. Participation in the registry described in subsection (b)(1) shall be voluntary, and a person creating, assisting in the creation of, or maintaining the registry shall not include in the registry information about an individual unless the individual consents to the inclusion of such information. Information about an individual that is included in the registry shall be subject to all applicable privacy protections under Federal and State law. Not later than 1 year after the establishment of the synthesized patient registry under subsection (b)(2), and annually thereafter, the Secretary shall submit a report that includes 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 2024, which shall remain available until expended.
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Sec. 2
Authorization to fund a patient registry for research on Long COVID and related conditions
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