The US National Institute on Aging (NIA) has allocated up to $300m for a six-year project to build a large database of Alzheimer’s research, according to an exclusive report by Reuters journalists.
The project aims to track the health of Americans over decades and offer insights into the brain-wasting disease. The platform is designed to house long-term health information on between 70% and 90% of the US population, using medical records, insurance claims, pharmacies, mobile devices, sensors, and various government agencies as sources.
Researchers hope that the database could help identify healthy people at risk of Alzheimer’s, a disease that affects about six million Americans. It could also address the chronic underrepresentation of people of color and different ethnicities in Alzheimer’s clinical trials, thus increasing enrollment from outside of urban academic medical centers.
The database could also track patients after they receive treatment. In January, Eisai and Biogen won accelerated US approval for Leqembi, a new treatment that slows the progression of Alzheimer’s in early-stage patients. Once the database is operational, the Centers for Medicare and Medicaid Services, which runs the US Medicare insurance program, is expected to require such tracking in a registry as a condition of reimbursement for Leqembi.
The system will be built in a secure computing environment with several restrictions to ensure the privacy of people’s health data. Although the grant, which was posted on March 13, has been years in the making, the earliest start date is set at April 2024, with a goal to establish an Alzheimer’s registry 21 months later. The Alzheimer’s Association and UsAgainstAlzheimer’s, two patient advocacy groups, took part in a workshop last spring to discuss the design of the platform.
The chief data officer of the NIH Office of Data Resources and Analytics, Partha Bhattacharyya, said the platform would enable researchers to recruit participants across the US. “If we are to play a greater role in prevention, we must start early,” he said, “That is not at age 65”.
WORDS: Scientific Inquirer Staff.
