The U.S. National Institute on Aging (NIA) is supporting a 6-year, $300 million initiative to create a sizable Alzheimer’s research database that will allow scientists to learn new things about the debilitating disease.
Officials from the National Institutes of Health (NIH), which includes the NIA, told Reuters that the grant will be used to create a data platform that will be able to store long-term health information on 70% to 90% of the American population.
According to them, the platform will use information from medical files, insurance claims, prescriptions, pharmacies, mobile devices, sensors, and various governmental organizations.
According to Dr. Nina Silverberg, director of the NIA’s Alzheimer’s Disease Research Centers program, “Real-world data is what we need to make a lot of decisions regarding the use of drugs and looking actually at a much broader population than most clinical studies can cover.”
The condition, which can begin up to 20 years before memory problems appear, can be tracked in individuals both before and after they begin to show symptoms.
Leqembi, a novel medication from Eisai Co Ltd and Biogen Inc. that slows the progression of the illness in early-stage patients, has sparked interest in Alzheimer’s research.
For upcoming treatment studies, the database might assist identify healthy people who are at risk for Alzheimer’s, which affects around 6 million Americans. Additionally, it seeks to address the persistent underrepresentation of persons of color and other ethnic groups in Alzheimer’s clinical trials and may aid in boosting enrolment from locations other than urban academic medical facilities.
Eventually developed, the platform might potentially keep track of patients after they take therapies like Leqembi, which was granted accelerated approval in the United States in January and is anticipated to be given standard FDA approval by July 6.
Leqembi’s payment under the American Medicare health program for senior citizens will probably be contingent upon such tracking in a registry.
Although Silverberg acknowledged that “it could be feasible to utilize it for that purpose, “we didn’t develop it for that reason.”
A request for comment was not answered by the Centers for Medicare and Medicaid Services, which oversees the American Medicare insurance program.
According to Silverberg, the data platform may also assist researchers in studying other diseases in determining which people are most vulnerable and the effects of treatments.
The United States fell behind other nations with national health systems during the epidemic in its ability to examine patient data for COVID-19.
According to Silverberg, the system would be created in a secure computer environment with a number of limitations to guarantee the privacy of people’s health information.
The grant took years to complete and was finally posted on March 13. The financing announcement targets an Alzheimer’s registry to be established 21 months after the funding announcement’s earliest start date of April 2024.
In order to debate the platform’s design, several parties, including Medicare and the Alzheimer’s Association, and UsAgainstAlzheimer’s, participated in a workshop last spring.
The Alzheimer’s Association expects to submit an application for the NIA platform grant, which will provide $50 million year research for up to six years, according to Chief Scientific Officer Maria Carrillo.
The NIH Office of Data Resources and Analytics chief data officer, Partha Bhattacharyya, stated: “We hope this platform will allow researchers to recruit across the United States.”
“We need to get going early if we want to contribute more to prevention. Not at 65 years old, “said he.
