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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.


Hosted on GitHub:

Demo Site:




Matthew I Bellgard, Lee Render, Maciej Radochonski and Adam Hunter, Second generation registry framework, Source Code Biol Med. 2014 Jun 20;9:14.

Matthew Bellgard, Christophe Beroud, Kay Parkinson, Tess Harris, Segolene Ayme, Gareth Baynam, Tarun Weeramanthri, Hugh Dawkins and Adam Hunter, Dispelling myths about rare disease registry system development. Source Code for Biology and Medicine, 2013. 8(1): p. 21.

Rodrigues M, Hammond-Tooke G, Kidd A, Love D, Patel R, Dawkins H, Bellgard M, Roxburgh R, The New Zealand Neuromuscular Disease Registry. J Clin Neurosci, 2012. 19(12): p. 1749-50.

Bellgard MI, Macgregor A, Janon F, Harvey A, O'leary P, Hunter A and Dawkins H, A modular approach to disease registry design: successful adoption of an internet-based rare disease registry. Hum Mutat 33: E2356-2366.

For developers

We do our Python 3 development using Docker containers and docker-compose. You will have to set up Docker and docker-compose on your development machine.

All the development tasks can be done by using docker-compose, a helper shell script ( is also provided in this directory. Please run it without any arguments for help on its usage.

A typical usage is:

./ build base
./ build builder
./ build dev
./ up

This will start up all the docker containers needed for dev. You can access the RDRF application on http://localhost:8000 (replace localhost with $ boot2docker ip if using boot2docker) after this. You can login with one of the default users admin/admin.


  1. Fork next_release branch
  2. Make changes on a feature branch
  3. Submit pull request

Updating the Documentation

Documentation for the Rare Disease Registry Framework is maintained within this git repository, on the gh-pages branch.

Update the documentation by editing the reStructured Text source files as needed. You can then regenerate the HTML version of the documentation by running within the rst/ directory.

When you are done, commit the result and make a pull-request into the gh-pages branch.


The Rare Disease Registry Framework (RDRF) is an open source tool for the creation of web-based patient registries.




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