Access or Share LINKAGE Data

User Groups

Two primary groups are eligible for participation in the LINKAGE program:

• Studies: NIA grantees with active grant awards that link their NIA-funded Study data to Centers for Medicare & Medicaid Services (CMS) data.
• Researchers: Any individual conducting research using a linked dataset from an NIA-funded Study. These individuals must be affiliated with a U.S.-based institution and accessing data from the United States.

Members with existing studies in LINKAGE and past and existing NIA-funded grantees are also eligible.

Study Guidelines for Joining the LINKAGE Program

To join LINKAGE as a Study, you must meet the following criteria:

• Demonstrate that you are affiliated with a U.S.-based institution and accessing data from the U.S.
• Have an active NIA grant award with at least one cohort.
• Obtain consent or a waiver of consent for CMS data linkages.
• Provide proof of sufficient personal identifiers to support CMS data linkages.
• Commit to sharing your linked datasets with researchers, either at the time that you join or at a future date.
• Adhere to the CMS Data Cell Size Suppression Policy .
• Data Access Requesters, Data Custodians, and Compliance Officers must be U.S. Citizens or permanent legal residents .

Tool for Joining the Program and Maintaining Program Participation

LINKAGE Digital Onboarding: Concierge Services (DOCS)

To join the Program and maintain participation, you’ll access and use the newly released LINKAGE DOCS portal.

LINKAGE DOCS assists you to:

• Utilize online forms that reduce the number of duplicative fields across different forms and automatically import your past responses into updated forms for amendment requests.
• Provide step-by-step workflow tracking.
• Send you notifications about the status of your work and actions you’ll need to take.

The portal also features informational resources, including access to detailed descriptions of CMS data as well as training courses on those data and the LINKAGE Enclave.

To link, add, and share your Study data, you will need to establish a LINKAGE DOCS account.

To request access to LINKAGE DOCS:

1. Contact support@linkagesupport.zendesk.com to request a Study Lead account.

Please note that Studies have three user roles available in LINKAGE DOCS:

1. Study Lead, or the person who will set up a profile for your Study and add members of your team to your LINKAGE DOCS access group
2. Study Requestor, or an individual who can help to complete and manage Study-related tasks and request NIA Data Use Agreement (DUA) extensions
3. Study Member, or an individual who can help to complete and manage Study-related tasks

By default, NIA assigns your Study’s principal investigator (PI) the role of Study Lead. However, your Study PI can delegate this role to another individual if needed.

Researcher Guidelines for Accessing LINKAGE Data

To join LINKAGE as a Researcher, you must meet the following criteria:

• Demonstrate that you are affiliated with a U.S.-based institution.
• Obtain approval from a participating Study to use its CMS data in your research project.
• Acquire an Institutional Review Board (IRB) letter or waiver that covers your planned uses of CMS and NIA-funded Study data.
• Adhere to the CMS Data Cell Size Suppression Policy .
• Data Access Requesters, Data Custodians, and Compliance Officers must be U.S. Citizens or permanent legal residents .

To access LINKAGE data, you will need to establish a LINKAGE DOCS account.

To request access to LINKAGE DOCS:

1. Contact support@linkagesupport.zendesk.com to request a Researcher Lead account.

Please note that researchers have three user roles available in LINKAGE DOCS:

1. Researcher Lead, or the person who will set up a profile for your research project and add members of your team to your LINKAGE DOCS access group
2. Research Requestor, or an individual who can help to complete NIA DUA request packages and request NIA DUA extensions
3. Researcher, or individuals who can help to complete and manage NIA DUA request packages

By default, NIA assigns your Researcher PI the role of researcher lead. However, your Researcher PI can delegate this role to another individual if needed.

For more information on the steps researchers need to take to access NIA-funded Study data once Study approval has been obtained, please consult the LINKAGE/NIA

LINKAGE Program Participation in 2025

In 2025, the LINKAGE Program approved 142 NIA DUA applications from both Studies and Researchers. The following table provides a summary of the NIA DUA activities.

DBSR