VASCERN News
23 July 2024
Revision of Rare Vascular Tumors in the Orphanet Database
The Clinical Patient Management System (CPMS) is slowly being implemented in the various VASCERN Rare Disease Working Groups (RDWGs).
So far, we have 50 registered users in the CPMS, 38 of which are active, and we have opened 6 panels where patient cases are being discussed between our experts.
Several new features have also recently been added to the CPMS in order to help make the system more user-friendly for all participants. Some notable improvements include:
- the ability to now move forwards and backwards through the panel workflow, so that clinical data/images and/or new panel members can be added as needed.
- the ability to “copy” panels so that if a new panel with the same patient needs to be opened, the clinical data/images can be copied and do not have to be entered again.
- ERN websites have been linked to the CPMS map feature
- Selecting “preferences” is now mandatory for all users so that they can easily be found by others by their specialty/disease working group.
- Dates of consent can be added for each type of consent given (i.e. consent for care, database/registries and research).
- Text annotations are now possible in the Osimis medical imaging viewer.
If you are a doctor with a complex clinical case that you would like to discuss with the experts of VASCERN, please get in touch with one of the VASCERN HCP members or you can contact VASCERN directly.