The GUID Tool is a customized software application that generates a Global Unique Identifier for each study participant. The GUID is a subject ID that allows researchers to share data specific to a study participant without exposing personally identifiable information (PII). The GUID is made up of random alpha-numeric characters and is NOT generated from PII/PHI. As such, it has been approved by the NIH Office of General Counsel. GUID Generation complies with HIPAA regulations for the protection of PII/PHI. For more information regarding GUID and HIPAA click here.
In order to submit data to NTRR, the system expects all prospective studies to include a GUID in the data submission. For retrospective studies, the NTRR team understands that the participant data needed to generate a GUID may not be available. To account for this, NTRR provides the capability to generate PseudoGUIDs. However, submitting data with PseudoGUIDs silos the associated research data from the other data associated with valid GUIDs.
The process for generating a GUID is listed below:
- User/Researcher executes the GUID tool client locally
- PII is entered (double data entered and checked)
- PII is combined and one-way hash codes are generated
PII cannot be extracted from these hash codes, they are strictly one-way hash algorithms
- The one-way hash codes are sent to the GUID server
- If the hash codes match the server's hash codes for an existing GUID, then that GUID is returned
- If the hash codes do not match, then a new random GUID is generated and returned
GUID generation process: Learn More
The GUID process has two important attributes:
- PII is never sent to the FITBIR system
- The GUID is a random number not generated from PII/PHI
In order to generate a GUID for a subject, the following PII is required:
- Complete legal given (first) name of subject at birth
- Complete legal additional name of subject at birth (If the subject has a middle name)
- Complete legal family (last) name of subject at birth
- Day of birth
- Month of birth
- Year of birth
- Name of city/municipality in which subject was born
- Country of birth
In order to generate a GUID for a subject, the following PII is optional:
- Physical sex of subject at birth
- Government Issued or National ID Number
- Country issuing Government-Issued or National ID