Data Sharing & Data Requests
Data Sharing and Available Resources
To advance the science fueling Alzheimer’s treatment and care, everyone can explore the types of data collected by ALZ-NET to see what’s available, and we also provide a no-cost, publicly accessible Data Dashboard for high-level exploration of key metrics.
All ALZ-NET data are collected, standardized and archived according to comprehensive protocols. Every dataset undergoes a strict de-identification process in line with robust privacy and security standards. Access is governed by the Data User Code of Conduct, which all users must agree to in order to ensure the ethical and responsible use of ALZ-NET data
Those who are interested in asking research questions that utilize the data collected as part of the Alzheimer’s Network for Treatment and Diagnostics (ALZ-NET) are encouraged to do so as a collaborative effort within the ALZ-NET structure. Applicants can submit a Data Access and Use Request (DAUR) for approval before access is granted.
In the future, aggregated ALZ-NET data will also be discoverable through the Global Alzheimer’s Association Interactive Network (GAAIN), expanding its reach and collaborative potential.
Data Dashboard
The ALZ-NET Data Dashboard is an interactive analytics and visualization platform that offers inclusive and open access to aggregated de-identified registry data. Anyone can explore national high-level ALZ-NET data metrics at any time, while participating ALZ-NET sites can log in to view their own de-identified, site-level data to compare against national metrics.
This dynamic, user-friendly dashboard allows scientists, clinicians and the broader community to:
- Explore clinical patterns
- Monitor emerging safety trends
- Gain actionable insights into the data
- Track ALZ-NET's progress and contributions to Alzheimer's research and treatment
All users of the Data Dashboard are required to follow the Data User Code of Conduct, ensuring that data is used in an ethical and responsible manner.
Data Access and Use Request (DAUR)
The ALZ-NET DAUR provides the scientific community with a pathway to apply for use of ALZ-NET data to pursue their own research questions and advance knowledge that benefits the field. The DAUR application is open, and individuals are able to submit formal applications and agree to abide by the data access and request policy if the request is approved
All applications will be reviewed by the ALZ-NET Data Access and Use Committee (DAUC), which is responsible for ensuring data is shared in a transparent, consistent and responsible manner. The committee provides oversight to safeguard the use of ALZ-NET health data, while also promoting equitable practices. To support these goals, the DAUC includes representatives from historically underrepresented community partners and health systems, ensuring requests reflect diverse perspectives and standards of equity.
Associated Fees
When a DAUR application is approved, the DAUC will provide the applicant with an estimate of both the cost and the timeline for preparing and delivering the requested data. Because ALZ-NET is continually evolving and each request is unique, fees will vary depending on the scope and complexity of the request.
Factors considered in developing the fee structure may include, but are not limited to:
- Data Management
- Data Transfer Specification (DTS)
- DTS Maintenance
- Data Transfers & QC Transfer
- Data source fee
- Imaging
- Biosamples
- Project Management Support
- Infrastructure Fee
- To support the underlying structure of ALZ-NET
For additional questions related to ALZ-NET data, please contact [email protected].
If your study requires additional project management or regular data reports, please review our offerings for affiliated studies for more information.
Data Management and Policies
ALZ-NET and its sponsor, the Alzheimer’s Association, are committed to providing researchers and clinicians in the Alzheimer’s and dementia ecosphere an opportunity to access data collected through the network for purposes consistent with the goals of ALZ-NET. The Alzheimer’s Association has contracted with the American College of Radiology (ACR) to provide for the management and operations of ALZ-NET. ACR, as an independent contractor, provides, among other things, certain services related to the performance, delivery, provision of access to, and use of, services in furtherance of ALZ-NET and/or the Protocol. All data collected, stored and shared through ALZ-NET is managed by ACR.
This page provides information and guidelines for individuals and/or organizations wishing to learn more about ALZ-NET data or request access to clinical, imaging, or biospecimen data archived with ALZ-NET. Purposes for data access may include, but are not limited to, investigator-initiated research, affiliated research studies, technology development, and educational initiatives.
The ALZ-NET Data Sharing Policy outlines ALZ-NET’s established data sharing processes and demonstrates the commitment to efficiently and securely advancing Alzheimer’s disease and related dementia (ADRD) research initiatives. The ALZ-NET Data Access & Use Committee (DAUC), managed by ACR with committee members of other organizations, including the Alzheimer’s Association, oversees the transparent, consistent, and responsible sharing of ALZ-NET-wide health data. Any Data Use Agreements (DUA) are made between the requester and ACR.
Users of the ALZ-NET Data Dashboard and ALZ-NET data are expected to adhere to the Data User Code of Conduct at all times.