How to Access Data

NDWS survey data and linkable administrative data sources – including beneficiary-level CMS claims data – can be accessed by researchers for free.

Wave 2 Restricted Use Survey Files for the Community Clinician, Nursing Home, and Assisted Living surveys are now available. A limited dataset from the Home Care survey will be released later this summer. Wave 2 Public Use Files will also be released later this summer.

NDWS Data

There are three tiers of data available as part of NDWS, depending on your project’s needs:

  1. NDWS survey Public Use Files (PUFs) on NACDA↓
    • Contents: De-identified NDWS surveys (excluding administrator surveys)
    • Restrictions: No prior approval needed
  2. NDWS survey Restricted Use Files (RUFs) and non-CMS linkable data on MiCDA↓
    • Contents: Full NDWS RUF surveys (including administrator surveys) and the Environment, Process, and 
      Quality of Care data sources available to link with surveys
    • Restrictions: NDWS and IRB prior approval required; data users must be located in the USA at a US-based institution or company 
  3. NDWS survey Restricted Use Files (RUFs) and Beneficiary-level CMS data and NDWS claims-based summary files on LINKAGE↓
    • Contents: All NDWS Restricted Use Files as described in Tier 2, plus the CMS data available through LINKAGE
    • Restrictions: NDWS and NIA Privacy Board prior approvals required, requestor must be a U.S. citizen or permanent legal resident, and an IRB determination that your project is human subjects research must be provided

1. NDWS survey Public Use Files (PUFs) on NACDA

About

To minimize respondent re-identification risk, PUFs of the main NDWS surveys (Community Clinician, Nursing Home Staff, and Assisted Living Staff) have been prepared. These versions of the surveys are available through the National Archive of Computerized Data on Aging (NACDA) (note: The PUFs do not include the NDWS administrator surveys). If your project requires access to NDWS survey data alone, the Public Use files may be suitable. 

Some variables are modified or removed to minimize the re-identification risk to respondents. View the Wave 1 surveys on NACDA or on the Surveys page of this website to see the items potentially masked or modified in the PUFs to safeguard respondent privacy.

How to Access:

Access to the Public Use Files on NACDA does not require any prior approvals and is available by registering for an account on the NACDA website. 

Wave 1 PUFs are available now. Wave 2 PUFs will be released later this summer. 

Access the NDWS PUFs on NACDA
 

2. NDWS survey Restricted Use Files (RUFs) and non-CMS linkable data on MiCDA

About

Through Tier 2, researchers have access to the full, unmodified versions of the NDWS surveys, including the administrator surveys. In addition, these surveys include encrypted CMS and geographic (state and county) identifiers that allow pairing surveys with the other linked data available (i.e., the Environmental and Process & Quality of Care data sources {scroll down to "Other Data Linkages"}). Access to these data is available through the secure Michigan Center on the Demography of Aging (MiCDA) Virtual Data Enclave.

How to Access:

To request access to the Restricted Use Files on MiCDA:

  1. Obtain IRB approval for your proposed project.
  2. Submit your completed NDWS Restricted Data Request Form and associated documentation to info@ndws.org, and include “[Tier 2 Data Request]” in the subject line for prompt processing.
  3. Upon NDWS approval of your project, execute an NDWS Data Use Agreement (DUA) and have all authorized data users complete additional MiCDA forms (provided upon approval).  
     

3. NDWS survey Restricted Use Files (RUFs) and Beneficiary-level CMS data and NDWS claims-based summary files on LINKAGE

About

Researchers who desire access to CMS claims, encounter, and assessment data – including the Community Clinician and Nursing Home claims-based summary files prepared by NDWS – can access this data through the secure NIA-supported Linked Information for Knowledge on Aging Enclave (LINKAGE) data platform. Researchers must complete an additional Data Use Agreement (DUA) with the National Institute on Aging (NIA) to access these data in LINKAGE. Note: This NIA DUA is in addition to the NDWS DUA; both must be signed if CMS data are needed for your project.

Note: CMS claims, encounter, and assessment data, including the claims-based summary files, are only available to researchers who are U.S. citizens or permanent legal residents.

How to Access:

To request access to Tier 3 data on LINKAGE, complete the steps below in order:

  1. Obtain IRB approval for your project. (Note: LINKAGE requires an IRB determination that the project constitutes human subjects research. A determination of “Not human subjects research” will not be accepted.)
  2. Submit your completed NDWS Restricted Data Request Form and associated documentation to info@ndws.org, and include “[Tier 3 Data Request]” in the subject line for prompt processing.  
  3. Upon NDWS approval of your project (the steps below can be completed simultaneously and both must be completed before data access can be granted in LINKAGE):
    1. Execute an NDWS Data Use Agreement (DUA).
    2. Follow the NIA instructions – Researcher Guidelines for Accessing LINKAGE Data. 
       

Review Criteria for Restricted Data Access Requests

Applications to access NDWS Restricted Use Files (Tiers 2 and 3) are assessed using the following criteria:

  • Researchers requesting to access NDWS data must have sufficient credentials (e.g., affiliated with an accredited U.S. institution, have appropriate educational experience to analyze the data).
  • The proposed analysis/project should contribute to the scientific literature related to the professional dementia care workforce.
  • Requests for linked data are limited to those necessary for the proposed analysis.
  • Requested data and linkages must pose a low risk of potential reidentification of NDWS respondents, both by the project team and in any resulting publications. This includes adhering to the CMS Data Cell Size Suppression Policy.
  • The proposed analysis/project should be feasible given the project team’s resources and the requested data.

Applicants will receive a written decision within 2 to 3 weeks, provided the application is complete and follows instructions. 

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