The Rare Disease Registry
Framework

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.

Publications

M.I. Bellgard, L. Render, M. Radochonski, and A. Hunter, Second generation registry framework, Source Code for Biology and Medicine, 9 (2014), 14.

M.I. Bellgard, K.R. Napier, A.H. Bittles, J. Szer, S. Fletcher, N. Zeps, A.A. Hunter and J. Goldblatt, Design of a framework for the deployment of collaborative independent rare disease-centric registries: Gaucher Disease Registry model, Blood Cells Molecules and Diseases, (in press).

K.R. Napier, J. Pang, L. Lamont, C.E. Walker, H.J.S. Dawkins, A.A. Hunter, F.M. van Bockxmeer, G.F. Watts, M.I. Bellgard, A web-based registry for familial hypercholesterolaemia Heart, Lung and Circulation, (in press).

M.I. Bellgard, K. Napier, L. Render, M. Radochonski, L. Lamont, C. Graham, S.D. Wilton, S. Fletcher, J. Goldblatt, A. Hunter, T. Weeramanthri, A Registry Framework Enabling Patient-Centred Care. Studies in Health Technology and Informatics, 214 (2015), 8-14.

M.I. Bellgard, C.E. Walker, K.R. Napier, L. Lamont, A.A. Hunter, L. Render, M. Radochonski, J. Pang, A. Pedrotti, D.R. Sullivan, K. Kostner, W. Bishop, P.M. George, R.C. O’Brien, P.M. Clifton, F.M. van Bockxmeer, S.J. Nicholls, I. Hamilton-Craig, H.J.S. Dawkins and G.F. Watts, Design of the Familial Hypercholesterolaemia Australasia Network Registry: creating opportunities for greater international collaboration. Journal of Atherosclerosis and Thrombrosis, (in press).

M. Bellgard, C. Beroud, K. Parkinson, T. Harris, S. Ayme, G. Baynam, T. Weeramanthri, H. Dawkins, and A. Hunter, Dispelling myths about rare disease registry system development, Source Code for Biology and Medicine, 8 (2013), 21.

M.I. Bellgard, A. Macgregor, F. Janon, A. Harvey, P. O'Leary, A. Hunter, and H. Dawkins, A modular approach to disease registry design: successful adoption of an Internet-based rare disease registry, Human Mutation, 33 (2012), E2356–66.

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.