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Alzheimer’s Assn Collecting Real-World Therapy Data

Hands of older person

(Steve Buissinne, Pixabay)

1 Aug. 2022. An advocacy group for Alzheimer’s disease care and research is establishing a network for collecting long-term safety and outcomes data from patients in real-world settings. The Alzheimer’s Association announced today formation of its Alzheimer’s Network for Treatment and Diagnostics, or ALZ-NET, at its international research conference in San Diego.

ALZ-NET seeks to systematically compile data on tests and therapies from patients with Alzheimer’s disease and other types of dementia over extended periods of time, to better understand what works with patients as new treatments emerge. The network’s creators say the need for these data is becoming more urgent as results from several late-stage clinical trials are expected in the next 12 months. Alzheimer’s Association, based in Chicago, is establishing ALZ-Net with American College of Radiology, Critical Path Institute, Department of Biostatistics at Brown University School of Public Health, and American Society of Neuroradiology, as well as individual experts in clinical research and imaging.

“We are entering a new phase of Alzheimer’s treatment,” says Maria Carrillo, chief scientist at Alzheimer’s Association and co-lead ALZ-NET investigator, in an association statement. “ALZ-NET is the tool that will help us translate therapies into care that provides the most benefit to people living with the disease and their caregivers, in all communities.” Carrillo adds, “It is imperative that we all work together as a clinical and research community to build this infrastructure as it creates opportunities for evidence gathering, information sharing, and education.”

Medications not always taken as prescribed

While clinical trials provide valuable data on safety and efficacy of specific treatments, say the researchers, they’re often conducted under carefully controlled conditions or with specific populations. Clinicians also need to know how treatments work with patients in their day-to-day lives, when other factors come into play. For example, in clinical trials, patients are often closely monitored, and given a test treatment or placebo, at prescribed intervals. Under real-world conditions, patients may not always take their medications at the appropriate times, or are taking other drugs that can interact with their Alzheimer’s therapies.

“ALZ-NET will gather real-world clinical practice data and outcomes, including treatment effectiveness and side effects,” notes Gil Rabinovici, professor of memory and aging at University of California in San Francisco, and co-lead investigator. “The data will be shared quickly and transparently with doctors, patients, family members, researchers, regulators, such as the FDA, and payers, such as the Centers for Medicare and Medicaid Services.”

ALZ-NET is starting with a core set of FDA-approved treatments, and will expand its surveillance as FDA approves new Alzheimer’s disease therapies. The researchers also plan to recruit participants from a wider array of populations often underrepresented in clinical trials. “ALZ-NET will include people from a variety of backgrounds and communities,” adds Rabinovici, “to achieve representativeness beyond the populations historically enrolled in clinical trials.”

In addition, the team plans to build on experience gained and contacts made in nationwide studies of the clinical utility of brain amyloid PET scans. That research gathered data from more than 1,000 dementia care providers and imaging facilities in the U.S. Rabinovici was principal investigator for these studies.

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