Using global unique identifiers to link autism collections
Abstract
OBJECTIVE: To propose a centralized method for generating global unique identifiers to link collections of research data and specimens.
DESIGN: The work is a collaboration between the Simons Foundation Autism Research Initiative and the National Database for Autism Research. The system is implemented as a web service: an investigator inputs identifying information about a participant into a client application and sends encrypted information to a server application, which returns a generated global unique identifier. The authors evaluated the system using a volume test of one million simulated individuals and a field test on 2000 families (over 8000 individual participants) in an autism study.
MEASUREMENTS: Inverse probability of hash codes; rate of false identity of two individuals; rate of false split of single individual; percentage of subjects for which identifying information could be collected; percentage of hash codes generated successfully.
RESULTS: Large-volume simulation generated no false splits or false identity. Field testing in the Simons Foundation Autism Research Initiative Simplex Collection produced identifiers for 96% of children in the study and 77% of parents. On average, four out of five hash codes per subject were generated perfectly (only one perfect hash is required for subsequent matching).
DISCUSSION: The system must achieve balance among the competing goals of distinguishing individuals, collecting accurate information for matching, and protecting…
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