The new data will allow external researchers picked for Kennedy's autism studies to study "comprehensive" patient data with "broad coverage" of the U.S. population for the first time, NIH Director Dr. Jay Bhattacharya said.
"The idea of the platform is that the existing data resources are often fragmented and difficult to obtain.
Even data resources that are within the federal government are difficult to obtain," he said in a presentation to the agency's advisers.
In addition, a new disease registry is being launched to track Americans with autism, which will be integrated into the data.
Between 10 and 20 outside groups of researchers will be given grant funding and access to the records to produce Kennedy's autism studies.
While the selected researchers will be able to access and study the private medical data, Bhattacharya said they will not be able to download it.
"We will have some of the answers by September, but it's going to be an evolving process," he said, speaking with reporters. »
