Global Registries Platform

TREAT-NMD Global Registries Platform

It is still a busy time within the Global Registries Platform team, where we are working to assist registries with the on-boarding of Option 1 registries, for the use of the platform and assisting Option 2 registries with the dataset Project Managers to implement the updated datasets for SMA and DMD.

The platform support team will continue to assist the registries and dataset Project Managers to help increase the uptake of the Global Registries Platform but also to enhance the user experience and make the implementation of the new dataset as smooth as possible. This will also help the registries and support team later in the year when the first transfer of de-identified patient data is made to the Central Data Warehouse. The team will then be able to cleanse the data and ensure that the quality and content is accurate and as the data builds,  the Global Registries Platform support team will then be able to feed back to the TGDOC Chairs and the registries on any issues with the transfer of data, content of data and also provide more tooltips on how to make the process easier.

As we continue to work with registries on using the Global Registries Platform, whether in an Option or Option 2 capacity, we are also preparing the central data warehouse and its interactions with future TGDOC Enquiries process. The enquiries process will continue as it currently does during this transition phase,  until we start to receive data into the Central Data Warehouse from registries. Most importantly, the process will still follow the same voting and ethical approval process with the TGDOC Chairs. Once the data has begin to build within the central data warehouse, the report itself will be generated within the central data warehouse which helps to ensure the quality, governance and security of the data. This new process can also accommodate any registries who only wish to share their data for enquires, as the central data warehouse has the ability to hard delete data. In this instance data would be shared with the central data warehouse when requested to do so for a specific enquiry and this data would be included in the generation of the report. Once the appropriate time has taken place for the enquirer to ask any further questions in relation to the data report, the data would then undergo a hard delete form the central data warehouse, which will not affect the remaining data. The hard delete will be confirmed with the registry who provided it and will be entered into the automatic platform log.

Some Key dates:

The SMA Clinician and Patient Portals going live on 14th June.

LGMD Feasibility study and Pilot study are live from 14th June and will run until the 13th August.

The DMD datasets have recently undergone some further working group discussions and have now been agreed. The discussions have resulted in some changes to the functionality of the DMD dataset which will soon be reflected within the system. The DMD datasets are therefore expected to be released in mid September.

If you would like more information about the Global Registries Platform or to register your interest please click here