Global Registries Platform
TREAT-NMD Global Registries Platform
We are making great progress with the Global Registries Platform Project, with an expected go-live of May 2021 for the DMD and SMA Clinician and Patient Portals.
The team is growing, and we have welcomed two new team members who will assist with the planning, roll out and implementation of the platform.
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Background to the Project and latest news
The Clinician portal build was completed in mid-December 2020 and was ready for Beta testing as part of the project programme. The Beta testing was undertaken by a selection of DMD and SMA Registries, who were provided access to the system and began testing the week before Christmas. The Registries were asked to provide all testing feedback by 22nd January 2021 and that feedback is currently being collated, it will then be analysed internally by the project team before any change requests or additions to the system are proposed.
Meetings will be held in early February to discuss the testing feedback in more detail to agree any changes and these meetings will be with the IT contractors, Dataset Project managers and TGDOC Chairs.
The Patient Portal build began at the beginning of January and is currently underway with updates being provided at the fortnightly ‘sprint’ meetings. As part of the Patient Portal build, we are also looking at Dual Reported Registries and gathering information to ensure that this element of the Global Registries Platform meets the needs of its users. We are currently working towards being able to begin Beta testing the patient portal at the end of March.
In addition to the to the above, we have now received the confirmation of funding for adding a further disease module to the platform for Limb Girdle Muscular Dystrophy (LGMD). This is exciting news and the build for the LGMD module will begin almost 5 months ahead of the intended project start date it is a great show of confidence in the Global Registries Platform and will be a valued addition.