AD PACE Data Commons
Connecting scientists with patient experience data to advance Alzheimer’s research
The Alzheimer’s Disease Patient and Caregiver Engagement (AD PACE) Data Commons is a dynamic and expanding, publicly accessible repository of data sets from a range of studies and surveys gathering information from persons living with Alzheimer’s and/ or those who care for them. These data provide findings from studies eliciting preferences, insights, opinions, and outcomes that matter most to them across the Alzheimer’s lived experience. The data in the AD PACE Data Commons have been developed directly through the work of the AD PACE What Matters Most ™ Study, together with the A-LIST ™ What Matters Most Insights study, as well as studies contributed by industry and nonprofit partners.
UsAgainstAlzheimer’s as the convener of AD PACE is pleased to make this rich data repository available to qualified researchers across the Alzheimer’s community. Our hope is that this new resource will be used widely to advance the field’s commitment to ensure that decisions that affect the lives of those affected by Alzheimer’s will be made based on an evidence-based understanding of what matters most to them.
We look forward to our active and expanded collaborations with researchers who will put these resources to work in new ways that leverage the investments we have made with our partners through the AD PACE initiative.
How the AD PACE Data Commons Works:
Research: The AD PACE Data Commons is a dynamic and growing repository of data sets from person-centered, behavioral and preference research conducted and collected through the UsAgainstAlzheimer’s AD PACE initiative, which includes the multi-year, multi-pronged AD PACE What Matters Most™ research study and the A-LIST™ What Matters Most Insights study, as well as studies conducted by academic and industry partners.
Data Sets: The data sets include results from a wide range of Alzheimer’s-related surveys, one-on-on interviews, and other research designed to gain insights on what matters most to people living with Alzheimer’s and those who care for them.
Participants: Study and survey participants include patients with Alzheimer’s or related dementias, caregivers, and people interested in brain health. Participants span the Alzheimer’s lived experience and include, depending on the study, those in the earliest stages of disease, those in more advanced stages, and those who care for them.
Topics: The data sets in the AD PACE Data Commons cover a range of issues that matter most to people living with Alzheimer’s and their care partners, including views and attitudes regarding early detection, prevention, AD symptoms, prospective treatments and their benefits and risks, the challenges and burdens the disease and of caregiving, and outcomes that patients and caregivers value most.
Purpose: The AD PACE Data Commons is an publicly accessible data repository to support and accelerate new primary and secondary, person-centered research.
Investigators: Data sets will be made available to qualified researchers from academia, industry, government, and patient and caregiver communities upon approval by AD PACE and in accordance with the AD PACE Data Commons Operating Principles.
Access Requests: Please contact Terry Frangiosa at [email protected] to learn more about the Data Commons, the available datasets, and requirements for data access and use.
Current Repository
See a list of the current data sets available in the AD PACE Data Commons Guide.
Request Access
Please contact Terry Frangiosa at [email protected] to learn more about the Data Commons, the available datasets, and our Access and Use Policy.