Privacy-Preserving Record Linkage Task Team
Patients are often enrolled in multiple independent research projects. The value of the datasets generated is dramatically increased if they can be linked together at the level of an individual participant. However, where research projects are run by different investigators or organizations, it is often difficult to know when two datasets contain the same participant. At the same time, identifying information about the participant cannot usually be directly shared for data-protection reasons. Existing ID-generating solutions (NIH GUID, HD-ID etc.) are robustly set up but are project-specific and not globally unique. This topic is of interest not only for the rare disease community, but it also has a larger scope. It is therefore a Task Force was suggested by three members of IRDiRC Interdisciplinary Scientific Committee: Prof. Hanns Lochmüller, Dr. Petra Kaufmann and Dr. Domenica Taruscio, and set up in collaboration with the Regulatory and Ethics Working Group of the Global Alliance for Genomics and Health (GA4GH), co-chaired by Bartha Knoppers.