CHICAGO, April 3 (Reuters) – The U.S. National Institute on Aging (NIA) is funding a six-year, up to $300 million to build a massive Alzheimer’s research database that could track the health of Americans over decades and enable researchers to profit. New insights into brain-destroying diseases.
The NIA, part of the government’s National Institutes of Health (NIH), aims to build a data platform capable of housing long-term health information on 70% to 90% of the US population, officials told Reuters about the grant, which was not previously reported.
The platform will collect information from medical records, insurance claims, pharmacies, mobile devices, sensors and various government agencies.
“Real-world data that we need to make many decisions about the effectiveness of drugs and to look at a much wider population than most clinical trials can cover”, said in an interview.
Tracking patients before and after they develop Alzheimer’s symptoms is seen as integral to making progress against the disease, which can begin about 20 years before memory problems develop.
Alzheimer’s research is being developed by Lakembi, a new treatment from Eisai Co Ltd ( 4523.T ) and Biogen Inc ( BIIB.O ) that slows the progression of the disease in early-stage patients.
The database could help identify healthy people at risk for Alzheimer’s, which affects about 6 million Americans, for future drug trials. This could help address the chronic under-representation of people of color and ethnicity in Alzheimer’s clinical trials and increase enrollment from outside urban academic medical centers.
Once built, the platform could also track patients as they receive treatments like Lekambi, which won accelerated US approval in January and is expected to receive formal FDA approval by July 6.
US Medicare health plans for older adults would likely require such tracking in a registry as a condition of reimbursement for Lakembi.
“We didn’t design it for that purpose,” Silverberg said, but it is “possible” to use it for that purpose.
The Centers for Medicare and Medicaid Services, which runs the US Medicare insurance program, did not respond to a request for comment.
Silverberg said the data platform could help researchers working on other diseases understand which patients are most at risk and the effects of drugs.
During the pandemic, the United States lagged behind other countries with national health systems in being able to analyze patient data for Covid-19.
The system will be built in a secure computing environment with several restrictions to ensure the privacy of people’s health information, Silverberg said.
The grant, which was posted on March 13, has been years in the making. The funding announcement sets its first start date at April 2024, with the goal of establishing an Alzheimer’s registry 21 months later.
Several stakeholders, including Medicare and patient advocacy groups, attended a workshop last spring with the Alzheimer’s Association and USAAgainst Alzheimer’s to discuss the design of the platform.
Alzheimer’s Association Chief Science Officer Maria Carrillo said in an interview that the organization plans to apply for an NIA platform grant, which would provide $50 million annually for up to six years.
Partha Bhattacharya, chief data officer of the NIH Office of Data Resources and Analytics, said: “We envision this platform will allow researchers to recruit across the United States.”
“If we want to play a greater role in prevention, we must start early. It’s not at age 65,” he said.
Reporting by Julie Steenhuysen; Additional reporting by Ahmed Abulenin; Editing by Carolyn Hummer and Bill Berkrot
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