TREAT-NMD are currently expanding the infrastructure available to the registry curators who are all valued members of our network. This year, we have been focusing on what we can provide to our curators following feedback from our Annual Curators meeting in February. First, we are excited to announce the our new registry curator portal will be launching very soon.
This is an exclusive site available only to members of the registry network, and we hope that it will be a valuable resource for curators to keep in touch with each other, access our core resources and tools, submit data for projects and enquiries, and stay up to date with the latest news and information from TREAT-NMD. The portal has been designed with curators in mind, and we have had some amazing feedback so far! Secondly, we have been working hard on the development of our new global registry platform using REDCap, allowing registries of all sizes and resources the ability to easily collect TREAT-NMD datasets, analyse their data regardless of technical skill-level of the curator, whilst remaining in complete control of their data.
The platform will offer registries some much needed improvement to our original system, and will be available in every disease area. Behind the scenes, TREAT-NMD are overhauling our central data warehouse, allowing for automated quality control processes to ensure that the data submitted for patient-level projects is of the highest quality possible. We are grateful to all contributing curators that are involved in patient-level projects for helping get this up and running. Finally we have been working hard on expanding the existing data quality tool into all disease areas. This first of its kind tool currently allows DMD registry members to securely upload their data and immediately receive a report on the quality and completeness of the data aligned to the EMA data quality framework, all without sharing any patient-level information with TREAT-NMD itself!
We remain committed to giving back to the registries that choose to join our network. If you or your registry are interested in becoming part of the network and gaining access to the suite of tools TREAT-NMD offer (for free!), no matter how far along you are in the registry set up process, please get in touch with farjana.ali@treat-nmd.com.
