Federating patients identities: the case of rare diseases

Meriem Maaroufi, Paul Landais, Claude Messiaen, Marie-Christine Jaulent and Rémy Choquet; Orphanet Journal of Rare Diseases 2018 13:199 doi:10.1186/s13023-018-0948-6

Patient information in rare disease registries is generally collected from numerous data sources, necessitating the data to be federated. In addition, data for research purposes must be de-identified. Transforming nominative data into de-identified data is thus a key issue, while minimizing the number of identity duplicates. We propose a method enabling patient identity federation and rare disease data de-identification while preserving the pertinence of the provided data.
The simplicity of the algorithm and the universal and stable characteristics of the required input data make it potentially applicable beyond its current scope of implementation including European cross-border RD projects in the light of the recent EU Global Regulation for Data Protection.