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Anonymous Data Management For A Federally Funded Cohort Study

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YJP is a Epidemiology Expert, Genetic Epidemiology and Cancer Epidemiology Specialist, Biostatistics Consultant with world-class expertise in epidemiology, genetics, cancer epidemiology, biostatistics, medical research laboratories, biology, environmental science, health sciences, and applied cryptographic systems for anonymous data management.

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A large federally funded and ongoing epidemiologic investigation of chronic diseases sought to carry out genetic analysis of archived blood samples. Concern for the privacy of the participants was raised by the Institutional Review Board of the study's host institution. The Principal Investigator of the study sought a solution that would definitively preserve the anonymity of the genetic results, but would also retain the ability to link the genetic information to disease and risk factor information for statistical analysis. The solution was an anonymous data management system that protected the anonymity of genetic information by encrypting identities using a one-way function. The mathematical properties of the one-way function ensured that the original identifiers could not be derived from the encrypted link, but also that each participant's genetic information would be uniquely associated with their individual records. Working with a programmer, the final delivered products were data-entry and data-linking applications that carried out the primary tasks of anonymous data management. Similar solutions can be implemented using industry standard and open source databases and programming languages.

Read other articles by this KKAI Associate:

Technology assessment of genetic testing for a U.S. health insurance corporation

Epidemiology Expert, Genetic Epidemiology and Cancer Epidemiology Specialist, Biostatistics Consultant, epidemiology, genetics, cancer epidemiology, biostatistics, medical research laboratories, biology, environmental science, health sciences, and applied cryptographic systems for anonymous data management.
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Kevin Kennedy & Associates, Inc.
Rapid Response Engineering® Solutions
3905 Vincennes Road, Suite 320
Indianapolis, Indiana 46268
(317) 536-7000 voice
(317) 536-7220 fax

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