The Neurovascular Diseases Working Group (NEUROVASC-WG) is a new rare disease working group formed in January 2022. The group had its first spring meeting in Paris and online on June 10th, 2022, chaired by Dr. Dominique Hervé (NEUROVASC-WG Chair) and Dr. Anna Bersano (NEUROVASC-WG Co-Chair). Six healthcare professionals, and invited patient organizations and guests attended the meeting.
The meeting started with a welcome to all members and brief introductions from each attendee on their work and expertise in Moya Moya and CADASIL. Following that, the IT Helpdesk & End User Support Specialist gave a presentation on the use of the Clinical Patient Management System (CPMS). The VASCERN Project Manager led the group through a presentation on the history, structure, and primary goals of VASCERN, which led to fruitful discussions with the members and new ideas from the group.
The group discussed in-depth about the registries. Pim Kamerling, the VASCERN data steward, gave a presentation about the FAIR principles for registries, the minimum data set required for all the ERN registries, and the documents required to set up the NEUROVASC registry.
The group already has patient pathways for CADASIL and Moya Moya, and there will be further discussions on adapting these for VASCERN. The group also talked about their plans for future webinars.
There was enthusiasm to be part of the upcoming eLearning Moodle platform that should soon be provided by the European Commission to create the ERN Academy on Rare Diseases. The meeting came to a close with discussions on Do’s and Don’ts factsheets for patients and caregivers.
The NEUROVASC-WG had a productive first spring meeting. We anticipate webinars, Do’s and Don’ts factsheets, and further outputs from this group.