An official of the Ministry of Health and Social Services said on Friday that the Department of Health does not create a register of autism, contradicting an announcement made a few days ago by the director of the National Institutes of Health describing his plans to study the causes of autism.
“We are not creating a register of autism. The real world data platform will link existing data sets to support research on autism causes and information on improving processing strategies,” a department manager at CBS News said in a statement sent by e-mail.
THE Plans described By the director of NIH, Dr. Jay Bhattacharya Robert F. Kennedy Jr.have been the subject of intense criticism in recent days by plea groups And Autistic researchers.
Some providers diagnosed and treating autistic people were flooded by requests for friction of their data and canceling appointments, several federal health officials, concerns about confidentiality and patient concerns, told CBS News.
The news of the reversal of the HHS contradicting Bhattacharya was reported for the first time by Stat News.
The director of the NIH previously declared, as part of a presentation to a meeting of external advisers of the agency on the effort, that the NIH “would develop the national registers of diseases, including a news for autism” to integrate into a new “data platform” to study autism and other chronic diseases.
The HHS manager did not say if Bhattacharya has initially spoken badly or explain why his plan was reversed. Bhattacharya did not respond to a request for comments. HHS did not respond to a CBS information request for an interview with Bhattacharya about the register.
Some $ 50 million will be invested in the research effort, which includes the data platform, according to the Declaration of the HHS manager, which “aimed to understand the causes of ASD (autism spectrum disorder) and by improving processing by taking advantage of large-scale data resources and promoting cross collaboration.”
According to the manager, the NIH still plans to explore partnerships with other federal agencies, including centers for Medicare and Medicaid Services, “to facilitate a set of complete real health data which maintains the highest standards of safety and confidentiality of patients while supporting autism research and other areas such as chronic diseases.”
In a statement to CBS News, the NIH declared that its “secure data repository” would analyze the large -scale and identified data “for autism and chronic diseases, similar to that of the agency Cancer database. Research on autism would be “fully in accordance” with federal laws and regulations on privacy, said the agency.
“These efforts do not consist in following individuals. All the databases managed by NIHs follow the highest standards of security and confidentiality, the protection of information on personal health as absolute priority,” said NIH.
The HHS declaration marks the latest change to Kennedy’s autism research effort in recent weeks, since he announced for the first time the thrust at a White House meeting Earlier this month.
Bhattacharya told journalists Earlier this week That he provided that the financing of subsidies for research on autism would be “, hopefully”, awarded by September. It is later that the Initial calendar Described by Kennedy, who said that “by September, we will know what caused the epidemic of autism”.
“It is difficult to guarantee when science will make an advance. It depends, you know, nature has its say,” said Bhattacharya.