The Rare Disease Registry

Create a patient registry without software development.

Need a patient registry for your department, clinic or community?

RDRF allows for rapid creation of patient registries.

What is the Rare Disease Registry Framework?

The Rare Disease Registry Framework (RDRF) is an open source tool for the creation of web-based patient registries. What makes it unique is that data entry forms and questionnaires are based on reusable data element definitions (called "Common Data Elements" ) which can be created and/or loaded into the system at runtime. This means that registries can be created and modified without changes to the source code. RDRF has been developed at the Centre for Comparative Genomics, Murdoch University, Western Australia in partnership with the Office of Population Health Genomics, Department of Health Western Australia.


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M. Rodrigues, G. Hammond-Tooke, A. Kidd, D. Love, R. Patel, H. Dawkins, M. Bellgard, and R. Roxburgh, The New Zealand neuromuscular disease registry, Journal of Clinical Neuroscience, 19 (2012), 1749-1750.