Lessons learned from hemolytic uremic syndrome registries: recommendations for implementation.
Mina LazemAbbas SheikhtaheriNakysa HoomanPublished in: Orphanet journal of rare diseases (2021)
Based on the findings, we suggested a learning framework for developing and implementing an HUS registry. This framework includes lessons learned and suggestions for HUS registry purposes, minimum data set, data quality assurance, data collection methods, inclusion and exclusion criteria as well as data sources. This framework can help researchers develop HUS registries.