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Why NeuroGUID™?
Books have ISBNs and products have barcodes, cars have VIN's, even people have social security numbers. A GUID (Global Unique Identifier) is a version of such identifier.
Each study participant is assigned a unique patient identifier called a Neurological GUID (NeuroGUID™) that is created on a secure website by a specialized computer program that uses 10 pieces of information about a person.
The website and computer program used to generate NeuroGUIDs do not store any personal information (PII), but if the same information is entered again in the future, the program will return the same NeuroGUID™ every time. Once generated, this NeuroGUID™ will be used to uniquely identify that person in clinical research projects. As the NeuroGUID™ is a random string, it is impossible to identify a person from the NeuroGUID™. The NeuroGUID™ usage ensures that clinical research information from multiple sources could be linked to the same person; otherwise inaccurate conclusions about the disease may be drawn.
NeuroGUIDs should never be used in databases that also store personal information (PII), e.g., electronic health records systems, patient registries, or mobile apps, as this may re-identify research participants.
A new approach allows researchers to generate a System-specific Transactional Anonymous PIN (NeuroSTAmP™) that is a unique identifier per application (e.g. Epic) per institution (e.g. MGH). NeuroSTAmPs could be created using the same information as in NeuroGUID™ generation or by specifying a NeuroGUID™ instead, if known. Only the NeuroGUID™ server knows how to link multiple NeuroSTAmPs to a particular NeuroGUID™.
Thanks to NeuroSTAmPs, researchers will be able to merge even more information without exposing NeuroGUIDs to people or systems that contain personal data.
The use of GUIDs has been approved by the NIH Office of General Counsel. NeuroGUID Generation also complies with HIPPA regulations for the protection of PII/PHI. (Referenced from NIH's website for Contributing data, Federal Interagency Traumatic Brain Injury Research (FITBIR) informatics system: FITBIR: Global Unique Identifier (GUID Tool)https://fitbir.nih.gov/content/global-unique-identifier
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