RFK Jr.'s Major Autism Study to Use Private Health Records

Key TakeawaysThe National Institutes of Health is gathering private health data for a new autism studyBetween 10 to 20 research teams will be selected to access the dataOfficials say the data will remain protected and cannot be downloaded.TUESDAY, April 22, 2025 (HealthDay News) — The National Institutes of Health (NIH) will provide private health data to researchers for U.S. health chief Robert F. Kennedy Jr.'s new autism study.NIH Director Dr. Jay Bhattacharya told advisers the aim is to help researchers study autism by giving them access to "comprehensive" health records. These records will cover a wide range of people across the United States, CBS News reported.He told the agency's advisers that existing data resources are often fragmented and difficult to obtain."The NIH itself will often pay multiple times for the same data resource," he said in the presentation, according to CBS News. "Even data resources that are within the federal government are difficult to obtain."The database will include records from pharmacy chains, lab testing and even fitness trackers and smartwatches.It will also pull from patients treated by the Department of Veterans Affairs and the Indian Health Service, as well as insurance claims from private insurers.The NIH is also working with the Centers for Medicare & Medicaid Services to expand access to their records.Meanwhile, a new registry is being created to track those with autism, and that information will be part of the database, CBS News said.Between 10 and 20 outside research teams will be selected and given grants to study the data. Bhattacharya said those groups will be chosen "through normal NIH processes."Even though researchers will be allowed to access the private medical data, they won’t be allowed to download it. There will be "state of the art protections" to keep personal information safe, Bhattacharya said.He said bringing all the data together could help health agencies gain valuable insights into "real-time health monitoring.""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," Bhattacharya told CBS News.Kennedy previously claimed the project would find all the causes of autism by September.He recently walked that back, saying "we will have some of the answers by September, but it's going to be an evolving process."More informationAutism Speaks has more on autism spectrum disorder (ASD).SOURCE: CBS News, April 21, 2025.What This Means For YouA massive new research project will use private health information to better understand the causes of autism..Sign up for our weekly HealthDay newsletter

RFK Jr.'s Major Autism Study to Use Private Health Records

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