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The National Institutes of Health (NIH) is currently gathering private medical records from various federal and commercial sources to support a new autism research initiative led by Health and Human Services Secretary Robert F. Kennedy Jr., as announced by the NIH’s director, Dr. Jay Bhattacharya, on Monday.
This initiative aims to provide external researchers with unprecedented access to a comprehensive dataset representing a broad segment of the U.S. population, which could significantly enhance autism research. Dr. Bhattacharya noted that existing data resources are often too fragmented and challenging to procure, with NIH frequently paying multiple times for the same datasets. He emphasized the need for a more integrated data platform to streamline access to vital health information.
The integrated datasets will include medication records from pharmacy chains, lab testing and genomic data from individuals treated by the Department of Veterans Affairs and the Indian Health Service, as well as claims from private insurers. Additionally, data from wearable devices such as smartwatches and fitness trackers will be incorporated to deepen the analysis.
The NIH is also in discussions with the Centers for Medicare and Medicaid Services to expand their data-sharing agreements, aiming to broaden the scope of available information for researchers.
As part of this initiative, a new registry will be established to track individuals with autism in the United States, further contributing to the dataset. However, Kennedy has faced criticism from advocacy groups and experts regarding his characterization of autism as a “preventable disease,” which many consider stigmatizing and misleading.
Approximately 10 to 20 outside research groups will receive grants and access to the medical records for conducting studies on autism. While specific criteria for the selection of these groups were not detailed by Dr. Bhattacharya, he assured that the process would adhere to standard NIH protocols.
The research supported through this initiative is intended to encompass high-quality proposals across a spectrum of scientific approaches, ranging from basic research to epidemiological studies, ultimately aiming to improve treatment and management of autism. Dr. Bhattacharya acknowledged the diverse manifestations of autism, from highly functioning individuals to those with severe disabilities, and assured that the research would consider these variations.
While researchers will have access to the confidential medical data, it will not be downloadable. Dr. Bhattacharya committed to “state of the art protections” for maintaining the privacy and security of the data involved.
By creating a centralized data repository, Dr. Bhattacharya indicated that the initiative could also facilitate real-time health monitoring of Americans, potentially aiding in the study of other health issues in the future. “What we’re proposing is a transformative real-world data initiative, which aims to provide a robust and secure computational data platform for chronic disease and autism research,” he stated.
The NIH plans to implement a “rapid timeline” for launching the autism research, although specific dates for commencement and duration remain unspecified. Kennedy recently recalibrated his earlier assertion that solutions to autism’s causes would be fully understood by September, stating instead that while some insights would emerge, it will be an ongoing and evolving process.
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