Sec. 499B–5. Data system and clearinghouse on research information
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The Director of the National Institutes of Health, in consultation with the Director of the Program established under section 499B and the Director of the National Library of Medicine shall establish, maintain, and operate a data system for the collection, storage, analysis, retrieval, and timely dissemination of primary data regarding research on Long COVID that is conducted or supported by the Program. Information from the data system shall be available through information systems available to health care professionals and providers, researchers, and members of the public. The data system established under paragraph
(1)shall include a registry of clinical trials of experimental treatments that have been developed for research on Long COVID. Such registry shall include information on patient eligibility criteria, including the definition of Long COVID, and, as applicable, demographic information, including sex, age, disability status, ethnicity, and race, and the location of the trial site or sites. Principal investigators of trials described in subparagraph
(A)shall provide such information to the registry not later than 30 days after public announcement of the clinical trial. Once a trial has been completed, the principal investigator shall provide the registry with information pertaining to the results, including potential toxicities or adverse effects associated with the experimental treatment or treatments evaluated. The registry described in this paragraph shall be made available to researchers and the general public, in a machine-readable format. The Director of NIH, in consultation with the Director of the Program and with the National Library of Medicine, shall establish, maintain, and operate a program to provide information on research and prevention activities of the national research institutes that relate to research on Long COVID.