EMPOWER AD is a US ongoing observational study utilizing patient-centered electronic medical records (EMR) data retrieval. EMR are abstracted into a structured dataset with the aim of providing a longitudinal view of the disease course of people with Alzheimer’s disease (AD).

Data from EMR can provide real-world insights into AD; however, they are not readily accessible to all patients. Obtaining access to their digitized records may empower patients and support shared decision-making with their healthcare providers.

After informed consent, EMR data (eg, detailed diagnoses, resources utilized, prescriptions ordered, laboratory results, imaging) are retrospectively collected for approximately 7 years; medical records and observer (ie, care partner)-reported outcomes (eg, ADCS-ADL, RUD-Lite, and the AD-SPGI-S) are prospectively collected for ≤2 years.

Eligibility criteria include diagnoses of mild cognitive impairment or dementia with or without reference to AD; participants without reference to AD must have a reported progressive cognitive decline or be taking ≥1 indicated AD treatment. Planned enrollment is 2500 (first participant enrolled January 2022). Our intention is to recruit a patient sample representative of US AD epidemiology.

This interim cohort included 453 participants with mean age of 72.5 (SD: 8.8) years; 55% were female; 52.8% were care-partner enrolled and 47.2% were self-enrolled. Approximately 84% identified as White, 8% Black/African American, 1% Asian American, 1% American Indian/Alaska Native, 2% multiple races, and 3% unknown. Roughly 6% identified as Hispanic/Latinx.

EMPOWER AD uses an innovative, longitudinal approach to data collection and patient empowerment. EMPOWER AD findings may deepen our understanding of the AD clinical trajectory and improve the standard of care for persons living with AD in the US.