The GUID is a Global Unique Identifier for each study participant that allows researchers to aggregate and share a participant’s data without exposing personally identifiable information (PII). The GUID is made up of random alpha-numeric characters and is not generated from PII/PHI.[1]
[1] Johnson SB, Whitney G, McAuliffe M, Wang H, McCreedy E, Leon Rozenblit L, Evans CC. Using Global Unique Identifiers to Link Autism Collections. J. Am. Med. Inform. Assoc., Vol. 17, No. 6, 689-695, 2010 PMCID: PMC3000750.
*Note: Since the time of publication, the term GUID has taken on a more general meaning – “An implementation of the universally unique ID”. In the context of the BRICS system, the GUID process could now be better identified as a Privacy Preserving Record Linkage (PPRL) system. However, since the BRICS GUID system has been using the GUID term in documentation and software for more than a decade and it is familiar to our community, we will continue to use it for now.
The National Institute of Neurological Disorders & Stroke (NINDS), in conjunction with the National Institute of Aging (NIA) and the National Center for Advancing Translational Sciences, and the Common Data Repository for Nursing Science (cdRNS) and Parkinson’s Disease Biomarkers Program (PDBP), have successfully collaborated to develop a Multi-Tenant ‘Global Unique Identifier’ (GUID) solution for participant sharing across institutes and studies, known as the NINDS Centralized GUID solution.
- Management of study participants through the generation of a secure, random alphanumeric identifier (GUID)
- Mapping of study participants to study data for more efficient/comprehensive analysis
- Visibility to matching study participants/GUIDs across institutes and studies
- Collaboration amongst researchers to share study data (offline) about participants
