GUID

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 HIPPA regulations for the protection of PII/PHI. For more information regarding GUID and HIPAA click here.

In order to submit data to eyeGENE®, the system expects all prospective studies to include a GUID in the data submission. For retrospective studies, the eyeGENE® team understands that the participant data needed to generate a GUID may not be available. To account for this, eyeGENE® provides the capability to generate pseudo-GUIDs. However, submitting data with pseudo-GUIDs silos the associated research data from the other data associated with valid GUIDs.

For more on the GUID generation process, please click the GUID Usability Review (an overview of the GUID tool and how to use it)  

The process for generating a GUID is listed below:

1. User/Researcher executes the GUID tool client locally
2. PII is entered (double data entered and checked)
3. 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
4. The one-way hash codes are sent to the GUID server
5. If the hash codes match the server's hash codes for an existing GUID, then that GUID is returned
6. If the hash codes do not match, then a new random GUID is generated and returned

For more on the GUID generation process, please click here

The GUID process has two important attributes:

• PII is never sent to the eyeGENE® 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