Autism Science Foundation Statement Regarding Building an Autism “Registry”

New York, NY — April 24, 2025 — The Department of Health and Human Services (HHS) has announced intentions to amass an autism “registry” containing data from multiple sources in an effort to improve our understanding of the causes of autism. The Director of the National Institutes of Health, Dr. Jay Bhattacharya, says this database will include “comprehensive” data with “broad coverage” of the U.S. population. Few details have been provided, but this effort may include pharmacy data, health care encounter data, insurance claims, billing information, environmental data, and data extracted from sensors and wearable devices. The lack of details regarding how the data will be collected and used has worried families who are rightfully concerned about privacy and confidentiality. 

The use of registries and registry data in general can be a valuable tool in helping to understand the causes of diseases and disorders, but in this case, the lack of clarity around how data will be collected, shared, maintained, and tested for accuracy raises red flags. We don’t know who will be included. We don’t know how (or if) consent will be obtained from participants. We don’t know who will have access to the data or how it will be used. Typically, the answers to these questions are articulated at the beginning of a project, but that has not been the case in this instance. 

Community participation in the design, consent protocol, and use of data is critical to building and maintaining trust and preserving data integrity. We call upon HHS to include caregivers, individuals with autism, and established autism data scientists in a conversation around the need for and use of an autism registry. Failure to articulate the sources, uses, and consenting protocols around this registry may lead to people with autism avoiding or refusing medical care for fear of their data being shared without their permission. Parents may refrain from seeking evaluation and diagnosis for children who show early warning signs of autism and may shy away from early intervention. These would be tragic outcomes.  

About the Autism Science Foundation

The Autism Science Foundation (ASF) is a 501(c)(3) public charity that provides funding to scientists and organizations conducting autism research. ASF also provides information about autism to the general public and serves to increase awareness of autism spectrum disorders and the needs of individuals and families affected by autism. To learn more about the Autism Science Foundation or to make a donation, visit www.autismsciencefoundation.org.

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ASF media contact:

C.J. Volpe

cvolpe@autismsciencefoundation.org