November 16, 2021
2 min read

Alzheimer’s Association announces national data registry for quick, transparent data sharing

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The Alzheimer's Association and collaborators announced the formation of a national database, the National Treatment and Diagnostic Alzheimer’s Registry, at the Clinical Trials on Alzheimer’s Disease conference.

The association, as well as the American College of Radiology, the American Society of Neuroradiology, the department of biostatistics at Brown University School of Public Health and additional clinical research experts formed the database as an FDA-approved-agent agnostic approach to gathering routine clinical practice data and outcomes for quick and transparent dissemination to all stakeholders.

Earlier this year, the FDA gave accelerated approval for Aduhelm (aducanumab, Biogen/Eisai), an amyloid beta-directed antibody. It is the first treatment approved for patients with AD found to have mild cognitive impairment or mild dementia stage of disease.

Sponsors of at least two other disease-modifying drugs for AD are on record that they would apply to the FDA for accelerated approval.

Maria C. Carrillo, PhD
Maria C. Carrillo

"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," Maria C. Carrillo, PhD, Alzheimer's Association chief science officer, said in a press release. "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."

Stakeholders have pointed to previously successful registries in heart disease and cancer research that tracked the long-term performance of certain therapies using a large, real-world evidence dataset.

"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 continued.

The registry will be designed to continuously collect clinical practice data from health care providers caring for patients diagnosed with AD who are taking an FDA-approved disease-modifying treatment. It will also have room to expand based on the size and scope of scientific and medical advancements. When new drugs to treat the disease are approved and implemented in care, these will also be logged into the registry, according to the release.

"We need to assess the benefits that people from all backgrounds and communities derive from this and future treatments in the real world — in other words, outside of narrowly constrained clinical trials,” Carrillo added. “We also need to push for additional, even more effective therapies. This initiative aims to achieve this goal.”

In addition to supporting scientific efforts, the registry will provide government funding and regulatory agencies with vital information to guide policy, education, approval and grant-making decisions.

The Alzheimer's Association is expected to provide seed funding to launch the project, then later seek additional funding from various government and philanthropic sources.