National Alzheimer Disease Registry Announced to Collect Clinical Practice Data


The new registry will collect routine clinical practice data from the care of patients with Alzheimer disease who are taking an FDA-approved disease-modifying therapy.

Maria C. Carrillo, PhD, chief science officer of the Alzheimer’s Association

Maria C. Carrillo, PhD

The establishment of the National Treatment and Diagnostic Alzheimer’s Registry was announced at the 14th Clinical Trials on Alzheimer’s Disease Conference (CTAD) November 9-12, providing an opportunity to collect clinical real-world data from patients with Alzheimer disease (AD) and effectively track treatments and outcomes. The announcement was made by Maria C. Carrillo, PhD, chief science officer of the Alzheimer’s Association, on November 9 in Boston. 

The registry is collaborative initiative from the Alzheimer’s Association, the American College of Radiology, the American Society of Neuroradiology, the Department of Biostatistics, Brown University School of Public Health, as well as other clinical research experts. With a goal of quickly and transparently sharing clinical practice data with stakeholders, the information will be gathered via an FDA-approved-agent agnostic approach. Registry data will be collected from healthcare providers who care for patients with AD who are taking FDA-approved treatments, with new treatments added to the registry as they are approved and introduced to patient care. 

“Creation of a national provider registry for disease-modifying Alzheimer’s treatments, and for the associated diagnostic tests and biomarkers, is meant to swiftly advance the science,” Carrillo said in a statement. “The pipeline is growing, and more exciting advances are around the corner, including several more disease-modifying therapies that may be approved in the next 2 to 3 years.”

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A national registry is necessary for experts in the AD field, as well as patients living with the disease, due to a variety of disease-modifying drugs working their way through the pipeline and 2 currently applying for accelerated approval from the FDA. Monitoring the performance of these therapies in the long-term has been successful in other areas, namely heart disease and cancer, Carrillo said. 

“There is an urgent unmet need to provide effective treatments for all who need them, and a transparent approach that allows for immediate sharing of data will not only accelerate advances, but identify gaps in effectiveness and safety, and highlight opportunities to improve care and treatment for all affected by Alzheimer's,” Carrillo added in the statement. 

Initial seed funding will be provided by the Alzheimer’s Association, with additional funding anticipated to come from government and philanthropic efforts. Carrillo noted that the registry will not only guide and support scientific efforts, but will also assist in the development of policy, education, approval, and grantmaking decisions for governmental and regulatory agencies.

For more coverage of CTAD 2021, click here.

Alzheimer’s Association announces national effort to collect “real world” data on newly-approved treatments. News release. Alzheimer’s Association. November 9, 2021. Accessed November 10, 2021.
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