- The data entry forms have been fully implemented.
- We are currently working on the creation of site dashboards to inform the participating centres about their key performance indicator output.
- The EURO-NMD Coordinators are currently working on the selection of patient-reported outcome measures (PROMs).
- For the distribution of PROMs, we successfully carried out a first simple proof of concept and have been able to demonstrate that patients can contribute data to the registry themselves via an online form and that the data entered is then assigned to the correct patient encounter in the registry.
Testing of EURO-NMD Registry Hub
To ensure that the representatives of the five disease-working groups of ERN EURO-NMD and future users of the system are also satisfied with the data entry forms and overall implementation, a group of about 20 people was initially selected. The selection took into account that as many countries as possible and all disease groups should be represented. For this group of testers, the system was demonstrated in a live session, the recording of this session and a quick-start guide were provided, and they were then asked to enter patient data into the system that was as close to reality as possible, changing all identifiable information. We provided a separate survey for the structured collection of feedback and feature requests and asked the testers to report their overall impression in a partially standardised “User experience”-survey.
In response to the feature requests, apart from many minor changes, the tools for genetic diagnosis revised so that, for example, variants in mitochondrial DNA can be mapped more easily and it is possible to report which tests have already been carried out but have not yet led to a definitive result.
User experience feedback
The results of the user-experience survey so far indicate that the system is understandable, works reliably and that the collected data is considered relevant for patient care and research of neuromuscular diseases. The feedback on the time needed for data entry and on the completeness of the collected data items and response options was comparatively heterogeneous and illustrates very clearly a typical conflict of objectives.
We presented the EURO-NMD Registry and Registry Hub to all ERN-members at the EURO-NMD Board meeting in Brussels on July 6th 2022. Afterwards all members were invited to test the registry. We are looking forward to further feedback!