RDRF ( Rare Disease Registry Framework ) is a tool for the creation of web-based data entry forms and questionnaires based on reusable data element definitions ( "Common Data Elements" ) which can be created and/or loaded into the system at runtime without changes to the source code. RDRF has been developed at the Centre of Comparative Genomics (http://ccg.murdoch.edu.au/).
Bellgard, M.I., et al., A modular approach to disease registry design: successful adoption of an internet-based rare disease registry. Hum Mutat, 2012. 33(10): p. E2356-66. Other related citations
Rodrigues, M., et al., The New Zealand Neuromuscular Disease Registry. J Clin Neurosci, 2012. 19(12): p. 1749-50. Bellgard, M., et al., Dispelling myths about rare disease registry system development. Source Code for Biology and Medicine, 2013. 8(1): p. 21.