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The GRDR-GUID: a model for global sharing of patients de-identified data Yaffa R. Rubinstein1; Matthew McAuliffe2; Manuel Posada3; Domenica Taruscio4; Stephen C. Groft1 1Office of Rare Disease Research/NCATS/NIH, 2Center for Information Technology/NIH, 3 Institute of Rare Diseases Research, IIER-ISCIII, 4National Centre for Rare Diseases, Istituto Superiore di Sanità (Rome, Italy) The Global Rare Diseases Patient Registry Data Repository-GRDR aggregates de-identified patient data, using CDEs, from various rare disease registries utilizing a Global Unique Identifier (GUID)(1). The GUID is a unique random alpha-numeric set of characters assignedto each patient-data that GUID is NOT directly generated from personally identifiable information (PII). The GUID system allows the patient to be followed across studies and registries can be used also to link to biospecimens. GUID Process User executes the GUID tool client locallyPII is enteredPII is combined and one-way hash codes are generatedThe one-way hash codes are sent to the GUID serverIf the hash codes match the server's hash codes for an existing GUID, then that GUID is returnedIf the hash codes do not match, then a new random GUID is generated and returned To generate a GUID for the subject, the following PII is required (these elements are included in the ORDR/GRDR list of CDEs) (PII is never sent to the GRDR system): Complete legal given (first) name of subject at birthComplete Legal additional name of subject at birth (if the subject has a middle name)Complete legal family (last) name of the subject at birthDay of birth (1-31)Month of birth (1-12)Year of birth (####)Name of city/municipality in which subject was bornCountry of birthPhysical sex of subject at birth (M/F) The GUID is an ID that allows researchers to share data specific to a study participant without exposing PII and to track participants longitudinally, across multiple research sites and across multiple studies. RD-CONNECT (IRDiRC framework) is assessing possibilities to implement a GUID strategy in their work and the NIH-GUID is one of the possibilities under consideration. (1) Johnson SB, Whitney G, McAuliffe M, etal. Using Global Unique Identifiers to Link Autism Collections. J. Am. Med. Inform. Assoc. July 17, 2010. 10.1136/jamia.2009.002063. |
