Registries support various types of research, education, and outcomes improvement initiatives, including:

• Learn among the community
• Knowledge dissemination
• Encourage research and plan trials
• Recruit patients
• Understand the disease
• Evaluate effectiveness
• Safety monitoring
• Quality and outcomes improvement – treatment, practice, surveillance/monitoring
• Genotype/phenotype associations
• Hub to link other registries, repositories and data sources

These varied uses of registry data are made possible by the infrastructure available to the GRDR registry which supports unlimited ‘roles’ of users. Researchers and clinical investigators may register on the site for access to de-identified data, best practices and other information generated as part of this program. Patients may register as participants to contribute their data and learn from others. Protecting privacy of participants is of the upmost importance to the GRDR registry program. No identifying patient information is released outside the registry without the stated permission of the participant.