By Ahmed Abulen and a fighter sword
Washington (Reuters) -Federal Health Agencies will create a database from patients with auticare and Medicaid, which researchers will use to study the causes of autistic spectrum disorder, US Secretary and Human Services Robert F. Kenedy said on Wednesday.
The new platform will first focus on the studies surrounding the root causes of autism, said the Ministry of Health and Human Services and in the long run will link data on research on other chronic conditions.
“We pull away the curtain, with full transparency and accountability, to deliver the honest answers that families have been waiting for too long to hear,” says Kennedy, who has long promoted a debunked relationship between vaccines and autism.
National Health Institutes and Medicare and Medicaid Services Centers will partner in building a real -world data platform, which allows for extended research in claims, electronic medical records and carrier health monitoring devices, HHS said.
The project is part of the broader research efforts worth $ 50 million that Kennedy launches to identify the causes of autism, neurological and development, marked by interruptions in brain signals that cause people to behave, interact, interact and study in non-typical ways.
Researchers would use the data platform to examine the diagnosis of autism over time, health outcomes of medical and behavioral interventions, access to care and differences from demographics and geography, as well as the economic burden for families and health systems, HHS said.
These research areas “have absolutely nothing to do with the identification of the main causes of autism,” says Dr. Helen Taker-Flusberg, director of the Center for High Achms in Autism at Boston University.
Last month, HHS denied creating a new autism register after media reports that NIH director Jay Bhathacha told the employees that the agency would create one.
On Monday, Kennedy told Fox News that he would have a register, but he would be voluntary and would not include private information. The project will comply with confidentiality laws, HHS said, but did not specify whether the data would be anonymous or whether the participation is voluntary.
HHS, NIH and CMS did not respond to requests for further comment on how data and confidential concerns would be used.
NIH already had a national autism study database that included the type of data needed to conduct the reasons, said Tager-Flusberg.
The database, consisting of detailed research data collected by all NIH-funded surveys for 10-15 years, has not been available for several weeks, she told, and scientists have not been told why.
Researchers have already used data on Medicaid and Medicare’s claims for a long time, said Eric Rubenstein, a researcher of autism at Boston University. The data is ideal for learning differences in healthcare and inequalities, he said, but does not include the environmental exposures that Kennedy seems interested.
In addition, there are gaps; It does not cover people with private or no insurance and people often get on and exclude Medicaid.
What it has is identifiable data points such as birth dates, gender and county, said Taker-Flusberg, who leads the coalition of autism scientists, a group created in response to Kennedy’s comments on the causes of autism.
Last month, Kennedy said NIH will determine by September what caused autism, an issue that has been avoiding scientists for decades. A week later, he said that “some of the answers” will be available until then.
The degree of autism among children in the United States reached a record level in 2022, with 1 in every 31 8-year-old affected, according to the Centers for Disease Control and Prevention.
Kennedy, a former environmental lawyer, suggested that environmental toxins are behind the rise and said he plans to look at everything from mold to medicine to identify the cause.
The reasons for autism are unclear. Experts say this is probably the result of a combination of genetic and environmental factors. Many attribute much of the increase in the diagnoses of a widespread screening and a relatively recent inclusion of a wider spectrum of behaviors to determine the condition.
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