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Access or Share LINKAGE Data

Researchers can use data from the Linkage Program or connect their own data sets. Learn more about how to get involved. 

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Audiences

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

  • Studies: NIA grantees with active grant awards which will link their NIA-funded study data to CMS data.  
  • Researchers: Any individual conducting research using a linked dataset from a NIA-funded study. These individuals must be affiliated with a U.S.-based institution and accessing data from the U.S.

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

Researcher guidelines for accessing LINKAGE data

Researchers can access and analyze NIA-funded study data that has been linked to Centers for Medicare & Medicaid Services (CMS) data using the LINKAGE Enclave. LINKAGE Enclave is a secure web application with statistical and desktop applications. Researchers must adhere to the CMS Data Cell Size Suppression Policy.

Learn more about CMS data sets and NIA-funded studies currently in LINKAGE.

To access LINKAGE data, you must

  1. Contact a NIA-funded study to obtain their written approval to use linked data for your research. View a list of NIA-funded studies. Note: This step needs to be completed before submitting a NIA DUA request package.
  2. Complete all documents in the DUA Request package.
  3. Submit the completed DUA request package and provide written confirmation of NIA-funded study approval to support@linkagesupport.zendesk.com. The DUA request package will go to a NIA Privacy Board for review and approval.
  4. Once the NIA DUA is approved, each Researcher will complete onboarding for LINKAGE Enclave and use it to access and analyze your linked data set(s). Researchers may only access the LINKAGE Enclave from the United States.

Study guidelines for joining the LINKAGE  Program

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

  • Demonstrate that you are conducting research and affiliated with a U.S. based institution.
  • Have an active NIA grant award with at least one cohort.
  • Obtain consent or a waiver of consent for CMS data linkages. 
  • Confirm availability of personal identifiers to support CMS data linkages. 
  • Decide to share your linked data set with other researchers in LINKAGE or opt-out of data sharing.
  • Adhere to the CMS Data Cell Size Suppression Policy.

How to link, add, and share Study data

Studies who meet the criteria stated above are required to complete these steps: 

  • Complete the DUA Request package.
  • Submit the package to support@linkagesupport.zendesk.com. The DUA request package will go to a NIA Privacy Board for review and approval.
  • Work with LINKAGE staff to link your study data to CMS data. 
  • Work with LINKAGE staff to define masking requirements for CMS variables. 
  • Complete onboarding for the LINKAGE Enclave and use it to access and analyze your linked data set(s). Studies may only access the LINKAGE Enclave from the United States.
  • If you are sharing linked data, you must also set up and manage your account for the LINKAGE Enclave data tool, including granting researchers access to your data set(s). 

To request the Study Participation form and the NIA DUA, please contact support@linkagesupport.zendesk.com

Enclave data analysis resources

LINKAGE Enclave can be used to analyze CMS data linked to NIA-funded study data.

Through LINKAGE Enclave, authorized users have free access to:

  • Personalized workspaces (up to 300 GB, 100 MB per user for individual workspaces)
  • Linked CMS and NIA-funded study datasets
  • Statistical applications
    • MATLAB*
    • Python
    • R
    • SAS
    • Stata
    • SPSS*
  • Office applications
    • Adobe Acrobat Reader
    • Microsoft Excel
    • Microsoft Word
    • Notepad++ (Text Editor)

*Limited licenses are available.

LINKAGE has a Federal Information Security Modernization Act of 2014 (FISMA) certification through CMS. For more information about the Enclave and its software, hardware, licenses, or security, please contact the LINKAGE team.

Technical assistance

You can receive administrative, data analysis, and technical support with: 

  • Accessing and completing your administrative forms including the NIA Data Use Agreement.
  • Submitting and reviewing your linked data sets.
  • Preparing your linked CMS data set. 
  • Training on the enclave data tools workspace.

To request support, contact the LINKAGE team.

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An official website of the National Institutes of Health