2024 Alzheimer’s Association Funding Program for Global Real-World Data Platforms (ALZ-RWD)
Australian Dementia Network Registry: RWD Therapy Surveillance Program
How can a national registry facilitate research on disease modifying therapies for Alzheimer’s?
Christopher Rowe, M.D.
University of Melbourne
Victoria, Australia
Background
The Australian Dementia Network (ADNeT) brings together Australia’s leading dementia researchers, individuals with Alzheimer’s and their caregivers, and clinicians with the goal of transforming research and clinical care for dementia. One of the project’s key initiatives is the establishment of the ADNeT Registry, a national clinical quality registry to track, benchmark, and report on the clinical care of people with Alzheimer’s or mild cognitive impairment (a subtle decline in memory that may precede Alzheimer’s).
Research Plan
Dr. Christopher Rowe and colleagues will expand and leverage the existing ADNeT Registry to monitor new disease modifying therapies for Alzheimer’s as they become available. First, the team will develop and implement a minimum dataset for disease modifying therapies (including clinical and brain imaging data), with a focus on safety and short- and long-term efficacy of treatments. In addition, the researchers will develop and distribute educational resources to assist clinicians in providing and monitoring disease modifying therapies using the ADNeT Registry. Finally, Dr. Rowe and colleagues will enhance existing data infrastructure to capture, harmonize, share, analyze, and link registry data within Australia and internationally.
Impact
This project will establish a national program to oversee the monitoring and performance of new disease modifying therapies for Alzheimer’s. The results may strengthen inclusive patient recruitment and drive improvements in clinical care and patient outcomes.