The Trial Ready Registry Framework (or TRRF) has been forked from the Rare Disease Registry Framework (or RDRF) by Queensland University of Technology's eResearch team in order to produce a trial ready framework that is fit for purpose across all diseases, with easy deployment, availability and efficient use.
RDRF has been developed at the Centre for Comparative Genomics, Murdoch University, Western Australia.
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 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.
Hosted on GitHub:
https://github.com/eresearchqut/trrf
Email:
Please cite the following:
Bellgard MI, Snelling T, McGree JM. RD-RAP: beyond rare disease patient registries, devising a comprehensive data and analytic framework. Orphanet J Rare Dis. 2019;14(1):176. Published 2019 Jul 12. doi:10.1186/s13023-019-1139-9
Other relevant publications:
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.