Experts, including Helen Tager-Flusberg from Boston University, argue that the data being used is inadequate for understanding autism's causes, emphasizing the need for research into genetics and prenatal factors.

In March 2025, HHS denied rumors of a formal autism registry, but Kennedy later confirmed the development of a voluntary database.

The proposed database will compile information from insurance claims, medical records, and wearable technology, although it has faced significant backlash from advocacy groups and medical professionals.

HHS plans to implement a data use agreement focusing on Medicare and Medicaid enrollees diagnosed with autism spectrum disorder, while addressing privacy concerns.

Amid rising autism rates in the U.S., with the CDC estimating that 1 in 31 children are affected, Kennedy aims to provide insights into the causes of autism by September 2025.

Researchers will analyze trends in autism diagnosis, health outcomes, access to care, and the economic burden autism places on families and healthcare systems.

The Health and Human Services (HHS) plan will serve as a pilot study to investigate chronic conditions and their treatments, focusing on autism.

Following the announcement, the Autism Science Foundation reported an influx of inquiries from worried families, indicating a climate of fear regarding autism diagnosis and treatment.

Concerns have been raised about patient privacy and the need for de-identification of personal health data used in the research to protect confidentiality.

Initial reactions from advocacy organizations and medical professionals were negative, citing concerns over privacy and the exclusion of autistic individuals from the decision-making process.

The Autism Self Advocacy Network has expressed disappointment over the lack of consultation with the autism community in the planning of the new database.

Concerns about privacy were heightened after NIH Director Dr. Jay Bhattacharya's initial comments about a 'new autism registry,' prompting criticism from organizations advocating for autistic individuals.