U.S. Department of Health and Human ServicesHHS National Institutes of HealthNIH National Center for Advancing Translational SciencesNCATS
Home

Understand Data Principles

Overview

It is critical to fully understand what data are, and the best practices and guiding principles that a registry should follow when collecting, maintaining, and sharing data. Having entrusted you with information about themselves and their rare disease, registry participants expect you to act in their best interest with respect to being transparent and open. Researchers need to have confidence in the quality of your registry’s data.