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.

A Demo Site is available for you to try out online. Different levels of access are available, including admin (username and password: admin), data curator (username and password: curator), genetic staff (username and password: genetic) and clinical staff (username and password: clinical).

NIH/NCATS Global Rare Diseases Patient Registry (GRDR) Data Elements

RDRF includes the GRDR model registry of Common Data Elements (CDEs). The GRDR CDEs in RDRF are organised into 9 categories:

  • Current contact information
  • Sociodemographic information
  • Diagnosis
  • Family history
  • Anthropometric (body measurement) information
  • Patient-reported outcomes
  • Medications, devices and health services
  • Clinical research participation and biospecimen donation
  • Communication and preferences

A demo GRDR Registry is available for you to try out online. Admin user (username and password: admin) and curator user (username: grdrcurator, password: GRDRcurator1!) logins are available.

The RD-Connect Common Data Elements (CDEs)

RDRF includes the RD-Connect Common Data Elements. This is a minimum data set for patient data entry to be used in the RD-Connect framework. The RD-Connect CDEs in RDRF are organised into 4 categories:

  • Identification
  • Sociodemographic information
  • Diagnosis
  • Family history

A demo RD-Connect Registry is available for you to try out online. Admin user (username and password: admin) and curator user (username and password: rdccurator) logins are available.

Publications

If you use the RDRF, please cite:

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

Screencasts

Screencasts of the RDRF can be found on YouTube.

Contact

If you would like to know more or are using RDRF and would like to register your project please email and tell us about your project.

Other publications:

  • 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).
  • 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).
  • 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. 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.