About

The NIDDK Central Repository (NIDDK-CR)

The NIDDK Central Repository (NIDDK-CR) was established in 2003 as a centralized research resource to increase the impact of current and previously funded NIDDK studies, or clinical studies within NIDDK mission research areas by making study generated resources available to the broader scientific community for secondary research, encouraging scientists not involved in the original study to test new hypotheses without the need to collect new data or biospecimens, and providing opportunities to pool resources across studies to increase the power of statistical analyses.

NIDDK-CR is part of the broader NIH-funded biomedical data ecosystem and, as part of our ongoing efforts to strengthen NIDDK data ecosystem by making our resources more Findable, Accessible, Interoperable, and Reusable (FAIR), has joined the NIH Centralized ‘Global Unique Identifier’ (GUID) Server, a privacy-preserving record linkage system for sharing participant data across NIH Institutes and studies. GUID generation and storage is supported by the NIH Center for Information Technology’s Biomedical Research Informatics Computing System (BRICS) platform and were developed in collaboration with the National Institute of Neurological Disorders & Stroke (NINDS), the National Institute of Aging (NIA), and the Parkinson’s Disease Biomarkers Program (PDBP) as a multi-tenant centralized solution to allow researchers to aggregate and share a research participant’s data without exposing personally identifiable information (PII).

The NIDDK GUID instance, supported by NIH CIT BRICS, provides authorized individuals from participating studies at enrollment sites with the ability to generate and manage secure, random, alphanumeric, privacy-preserving record linkage (GUID/PPRL) unique identifiers. For information on eligibility requirements to receive support from NIDDK-CR and or to generate GUID/PPRL through NIDDK GUID Server, contact NIDDK-CRadmin@niddk.nih.gov

GUID/PPRL are created by processing specific PII/PHI from participants, transforming it into a series of hash codes through a unique algorithm. These hash codes, which involve one-way encryption, are generated directly on the researcher’s machine and then forwarded to the NIH Centralized GUID Server. Importantly, no PII/PHI ever leaves the researcher’s device. This one-way encryption ensures that the GUID/PPRL cannot be used to reconstruct any part of the original PII/PHI. For further guidance, a video tutorial on the GUID/PPRL generation process is available here: GUID Generation Process.

Once the NIDDK GUID instance receives the hash-codes, a check is performed for the following conditions:
Does the GUID/PPRL already exist for a study participant in the NIH Centralized GUID Server? If the GUID/PPRL already exists, can it be accessed by the user?

Depending on the initial condition check, an existing GUID/PPRL will be returned to the registered user, along with the corresponding GUID/PPRL metadata (described below), or if the hash-codes do not result in a match, a new GUID (a random 10-digit alpha-numeric format: NIH012ABC34DE) is generated which is then linked to the study participant and universally shared across all NIH Centralized GUID Server participating Institutes. No study data or information pertaining to a study is ever accessible through the NIH Centralized GUID Server.

GUID/PPRL Metadata:

1) First and last name of the individual registering the GUID/PPRL

2) Institute affiliation of the individual registering the GUID/PPRL

3) Date of GUID/PPRL registration

For information on how to access study data, please visit the NIDDK-CR Resources for Research (R4R) platform or submit an inquiry to NIDDK-CRsupport@niddk.nih.gov

NIDDK is responsible for identifying clinical studies where access to the NIH Centralized GUID Server will facilitate data and biospecimen sharing. In exceptional circumstances, access to the GUID server may be provided to non-NIDDK-funded projects.

To request a user account for the NIDDK GUID instance, visit the NIDDK GUID Module

For additional information about the NIH Centralized GUID Server and eligibility to participate, please contact NIDDK-CR Administrative Staff at NIDDK-CRadmin@niddk.nih.gov or the NIDDK-CR Support Staff at NIDDK-CRsupport@niddk.nih.gov.