Merged Data Requests

Once a merged data request is approved, requestors will need to submit a patient finder file to be matched with the USRDS database. Identifier variables and data formats are:

• An internal unique identifier (assigned by the requestor)
• SSN – text, nine digits, including leading zeros
• Date of birth – numeric, mmddyyyy if possible
• First name - text
• Last name - text
• Sex – character, M or F
• Date of death, if available

A merge can be performed on less than the entire list of identities, but the merge quality will be reduced. The preferred file format is an encrypted SAS dataset (SAS. 9.4), but a delimited flat file (.txt or .csv) or an MS Excel file (.xlsx) is also acceptable. After merging your file with the USRDS database, the Coordinating Center will return a crosswalk file containing the unique identifier you provided and the USRDS ID for all identified individuals. USRDS does not provide nor return unique patient identifiers.

More information on the contents of the SAFs can be found in the Researcher's Guide and Appendices (PDF, 1.3 MB) to the USRDS Database.

You will need to contact the USRDS to make any changes to your DUA. Below are the requirements for each type of amendment.

Amendments to acquire new data:

• New DUA form to include same title, same Requester Organization, datasets checked and year(s) listed, and new signatures of all individuals accessing the USRDS data
• Progress report, form with instructions found below
• Revised proposal with the new data added and highlighted. Please indicate if there are any personnel changes by adding new members and crossing off those who are no longer part of the team
• IRB approval/documentation

Changes to the project team require

• IRB approval/documentation of acknowledgement of new project team members
• New DUA form to include same title, same Requesting Organization, and Principal Investigator /new team member signatures.
• Revised proposal with the new team members’ contact information added and highlighted or with previously named team members who are no longer working on the project crossed off

DUAs are approved for a standard length of time, extensions may be granted in exceptional circumstances.

Extension requests require:

• The project Principal Investigator must send an email to the USRDS requesting an extension including a reason why the extension is necessary
• Progress report, form with instructions found below
• An extension request should not be sent until November of the year of expiration.

USRDS Data Publication

Planned publications based on USRDS data must be submitted for privacy assurance review to the USRDS Coordinating Center at usrds@niddk.nih.gov, in accordance with the USRDS Manuscript Approval Requirements (PDF, <1 MB).  Please use the subject line: “USRDS manuscript.” Privacy assurance requests should also include the approval Data Use Agreement (DUA) number, the title of the manuscript, and the journal to which the manuscript will be submitted.