The U.S. Department of Health and Human Services (HHS) is backing off of its plans to create a national registry of autistic people as part of its effort to centralize data about the condition.
Rather, HHS will instead spend tens of millions of dollars linking existing federal databases, according to a statement from the agency given to Behavioral Health Business.
The National Institutes of Health (NIH) working to partner with the Centers for Medicare & Medicaid Services (CMS), the Centers for Disease Control & Prevention (CDC), the Department of Defense, the Department of Veterans Affairs and other agencies to create “a comprehensive real-world health dataset that maintains the highest standards of security and patient privacy.”
“NIH is investing $50 million to launch a comprehensive research effort aimed at understanding the causes of [autism] and improving treatments by leveraging large-scale data resources and fostering cross-sector collaboration,” HHS told BHB.
New York news station PIX11 reported on April 24 that HHS said in a statement that it will not create a registry of people.
A few days before that, NIH Director Dr. Jay Bhattacharya said the administration would compile an extensive database with sensitive personal information detailing the medical lives of autistic people. CBS News reported that the registry and database would pull data from private medical records, federal databases, commercial databases, insurance claims, lab tests, genomics records and even smartwatches and fitness trackers.
In its statement, HHS continues to reflect Robert F. Kennedy Jr.’s, its secretary and top leader, assertions that autism is a disease with a cause that requires treatment. It is not.
It is a developmental condition caused by differences in brain structure and chemistry that can lead to differences and delays in communication and learning. Research into causes and treatments has been ongoing for decades and has so far concluded that it is largely a genetically induced condition, with the strongest associations for potential causes being tied to an autistic parent.
Earlier this month, RFK Jr. said that autism was an epidemic and that, by September, he and HHS would reveal the cause of autism, which he said, in making that announcement, was an environmental toxin.
The impetus for such an announcement was the regular release of new data from the CDC, which updated the estimated prevalence rate of autism among children ages 4 and 8 in 2022. The data show that autism overall is 17% more common compared to 2020, with a growing number of children also being diagnosed as having a co-occurring intellectual or developmental disorder.
