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Global Rare Diseases Patient Registry Data Repository

Global Unique Identifier (GUID)

Data submitted through NCATS’ GRDR® program is de-identified so that patients’ personally identifiable information (PII) is not exposed to NCATS staff and researchers. Individuals submitting de-identified data must code them using a random number known as a Global Unique Identifier (GUID), a computer-generated alphanumeric code that is unique to each research participant. Because the GUID is not generated from personal information, it enables data from a de-identified subject to be integrated; tracked over time; and linked across projects, databases and biobanks.

Through the GRDR program, NCATS provides complimentary software that registry owners can download to generate the GUID. To use the tool, registry owners submit the following information: 

  • Complete legal given first, middle and last names of subject at birth
  • Date of birth
  • Name of city/municipality in which subject was born
  • Country of birth
  • Physical sex of subject at birth (optional)

Using this information, the software generates a random number (GUID) and sends it to the GRDR. In other words, PII is never actually transferred to the GRDR or stored within the GRDR database.

Registry owners can access the GRDR GUID software or request a new account.

GUID Videos

Watch an overview of the GUID tool and the GUID creation process, including elements required to generate a GUID.

Watch a brief tutorial that demonstrates, step-by-step, how to access the GRDR GUID tool, how to create a GUID and how to upload information to generate a group of GUIDs.

Last updated: 08-07-2017
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