Sec. 499B. Establishment of Long COVID research program
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There is established within the Office of the Director of the National Institutes of Health a research program, to be known as the Long COVID Research Program (referred to in this part as the Program ), for purposes of expediting research to identify new ways to prevent, detect, manage, and treat symptoms associated with Long COVID. The Program shall be headed by a Director, appointed by the Secretary, in consultation with the Director of NIH, who has— experience managing clinical or research programs focused on pathogenic mechanisms and biological pathways related to Long COVID; and demonstrated commitment to addressing Long COVID and other infection-associated chronic conditions, such as myalgic encephalomyelitis/chronic fatigue syndrome, postural orthostatic tachycardia syndrome, and post-treatment Lyme disease syndrome/persistent Lyme disease.
In appointing the Director under subparagraph (A), the Secretary shall consult with independent, patient-led organizations or advocacy groups representing Long COVID patients and their families. The Director of the Program shall— act as the primary Federal official with responsibility for coordinating all Long COVID research conducted or supported by the National Institutes of Health; represent the National Institutes of Health Long COVID Research Program at all relevant Executive branch task force meetings and committees; and maintain communication with all relevant Federal departments and agencies to ensure the timely transmission of information concerning advances in Long COVID research and the clinical treatment of Long COVID and other infection-associated chronic conditions between such departments and agencies, and for dissemination to affected communities and health care providers.
The Program shall— investigate the etiology, pathophysiology, risk factors, and pathology of Long COVID in adults and children; explore the best ways to prevent, detect, monitor, manage, and treat Long COVID in adults and children; contribute knowledge to the understanding, prevention, mitigation, management, and treatment of Long COVID; develop and facilitate programs on Long COVID, within the National Institutes of Health and in other settings; conduct comparative research to understand the similarities and differences between Long COVID and other infection-associated chronic conditions with similar phenotypes, such as myalgic encephalomyelitis/chronic fatigue syndrome, postural orthostatic tachycardia syndrome, and post-treatment Lyme disease syndrome/persistent Lyme disease, and how activities funded by the Program could improve understanding of such other conditions; and conduct comparative research to understand the similarities and differences between Long COVID and severe, long-term effects from COVID–19 vaccinations.
The Director of the Program shall coordinate with the national research institutes and national centers, as appropriate, on Long COVID research. In carrying out this paragraph, the Director of the Program shall evaluate the Long COVID activities of each such institute or center and shall provide for the periodic reevaluation of such activities. The Director of the Program shall carry out all duties, including the development of the research plan under section 499B–1 in consultation with the heads of the national research institutes and national centers, with the advisory councils of such institutes and centers, and with the Long COVID Research Program Advisory Board established under section 499B–4.
The Director shall ensure that activities carried out under this section do not unnecessarily duplicate the efforts of other Federal departments or agencies.