The 'PREPARED' Registries Platform
(Patient REgistry Platform for collection and Analysis of REal-world Data)
The JWMDRC Patient Registries Team are proud to announce the creation of our bespoke, next-generation data collection and registry management software platform, developed in collaboration with Newcastle University’s Research Software Engineering Team.
Our PREPARED platform incorporates innovative features to support high-quality real world data collection and analysis, enable safety monitoring and enhance patient engagement through increased access to research opportunities.
Initial support for this work was provided in-kind by Newcastle University, with additional funds from donations secured from pharmaceutical companies supportive of our goals.
Industry do not receive any access to the system or data in return for their contributions – these are entirely philanthropic in nature and given as a gesture of support to acknowledge the importance of this work.
Thanks to our early supporters AskBio, Arrowhead, PepGen & Roche, the PREPARED platform was piloted in May 2025 with the relaunch of the UK Myotonic Dystrophy Patient Registry. Initial engagement is positive and user feedback has been overwhelmingly supportive! The UK FSHD and SMA Patient Registries are expected to move in June, and new NMD registries will start to be built on the system later in 2025.
Invest in the Future of Real-World Data Collection!
The registries team are now seeking additional donations to fund the continuation of essential development work, support transition of a decade’s worth of longitudinal patient data from the previous registry system and implement new data analysis features.
Please get in touch with the registry team to discuss how your organisation can demonstrate support for this critical research infrastructure via a one-off donation!
The registries team are hugely grateful to our early industry supporters for funding the initial development and demonstrating the power of multi-industry collaboration to facilitate this important project:
Visit a specific registry website for information on requesting registry data reports and utilising our targeted recruitment services, or email the registries team with details of your research requirements.
