The Department of Health & Human Services is reportedly not creating a national autism registry, which seemingly contradicts statements made by the director of the National Institute of Health last week.
While HHS is not creating a new registry of Americans with autism, the agency is launching a $50 million research effort to understand the causes of autism spectrum disorder and improve treatments, an official told STAT on Thursday.
"We are not creating an autism registry. The real-world data platform will link existing datasets to support research into causes of autism and insights into improved treatment strategies," an official for the department told CBS News.
WHY THIS MATTERS
Last week, National Institutes of Health Director Jay Bhattacharya announced the NIH would launch an initiative to integrate patient medical record data for researchers to study the factors influencing autism.
Data would come from pharmacies, health organizations, clinical data, claims and billing, environmental, and sensors and wearables. The NIH site indicates the protection of patient confidentiality within researcher access.
CBS News reported that the NIH would amass private medical records from federal and commercial databases to give to HHS Secretary Robert F. Kennedy Jr.
The use of private electronic health records and other data that could expose personally identifiable information created a backlash.
"At present, it is unclear what data will be included in the announced autism database – what the sources of the data will be, how they will be connected, and, crucially, whether any Personally Identifiable Information (PII) about autistic people will be provided to researchers. If all PII is actually stripped out of the database, and individuals cannot be identified, then it is normal practice to distribute that information to researchers without individuals' specific consent," said ASAN, the Autistic Self Advocacy Network, on Wednesday.
ASAN said it supports the use of large federal healthcare datasets for research purposes.
THE LARGER TREND
Kennedy has long faced criticism for his views linking autism to vaccines.
Calling autism an "epidemic," Kennedy has reportedly vowed to find the cause of the neurodevelopmental condition by September.
Kennedy, using data from the Centers for Disease Control and Prevention's Autism and Developmental Disabilities Monitoring (ADDM) Network, has said that cases in the United States have increased in recent years from 1 in 36 children to 1 in 31.
Email the writer: SMorse@himss.org