Autism Data Collection/Study

The National Institutes of Health is building a database to study autism. This database will be constructed using private medical records, which will include records from pharmacies and private insurers (claims), as well as data from smartwatches and fitness trackers. Selected researchers will then be able to access and study the private medical data; however, the NIH director, Dr. Jay Bhattachary, reported that the researchers will not be able to download the data.

Dr. Bhattachary reported that the goal of building the database is to consolidate the data in one location and yield a “transformative real-world data initiative” to “provide a secure and computational data platform for chronic disease and autism research.”

Concerns have been raised about this plan. Below is a YouTube video developed by “Mom on the Spectrum” reviewing what has been presented by Robert F. Kennedy and the NIH, as well as steps that individuals can take if they are worried about the database. https://www.youtube.com/watch?v=ClQASyw0uAQ (BBN does not endorse any of the advertisements that are run on the YouTube channel).

Brain & Behavior Neuropsychology evaluations would not be entered into this database. Our evaluations occur privately and cannot be accessed by the NIH. However, if you supply a superbill to your insurance, this may be able to be accessed as it would be a claim.