VASCERN News
17 December 2024
VASCERN holds its first Patient Case Discussion using CPMS 2.0
The Medium-Sized Arteries Working Group (MSA-WG) Spring Meeting was held in Ghent on April 4th, 2023, to discuss and share updates on various topics. The meeting was attended by 11 clinicians including 3 guests and 2 patient advocates. The agenda included a range of presentations, discussions, and updates on ongoing projects. In this article, we will provide an overview of the key topics covered during the meeting.
The morning session began with a warm welcome to all the participants and coffee. The first presentation of the day was on the Pregnancy Working Group and its Delphi Study about drug safety during pregnancy. Prof. Julie de Backer and Dr. Dorte Gulbrand Nielsen explained the aim of the study and the different processes involved in the study. They discussed the current progress of the project and other ongoing projects related to pregnancy. Dr. Michael Frank (MSA-WG Chair) presented the Delphi statement questionnaire on genetic testing and the next steps were defined.
The next session focused on updates on the MSA registry and ICD-Orphacodes harmonization. Dr. Michael Frank gave updates on the progress of the registries and the requirements to set it up. There was an open discussion among the attendees on the encoding process of ICD-orphacodes in their HCPs. The morning continued with a presentation on Patient-Reported Outcomes Measures (PROMs), which allow patients to report their health status and quality of life. This would be further discussed at the VASCERN Days.
Gloria Somalo (VASCERN Education & Scientific Project Officer) gave a presentation on the upcoming VASCERN summer school, which is a training program designed for medical interns, students, and young researchers in rare vascular diseases. The school is planned to take place in Paris by 2024. The group discussed the program and content on vascular Ehlers-Danlos syndrome and made some modifications. A transversal WG on Education will be set up to discuss the summer school program content across all rare disease working groups (RDWGs).
After a delicious lunch, the focus shifted to updates on ongoing and new projects from Eva Collado (ePAG Co-Chair MSA-WG) and Claire Guerrier (ePAG advocate MSA-WG). They discussed the European vEDS (vascular Ehlers-Danlos syndrome) emergency card, new Pills of Knowledge (PoKs), a study on life expectancy for vEDS patients, and translations. The group had an open discussion on these topics and decided on the next points of action. Final updates and revisions for the webinar on ‘Everything you wanted to know about vEDS’ was discussed including having a part 2 of the webinar.
The next session was dedicated to the final modifications and validation of the e-learning module for MSA-WG. Yaël Glin (VASCERN Project Officer) presented the module and invited the group to provide feedback on the module. Julie Hallac (VASCERN Project Manager) gave updates on VASCERN activities, including an upcoming website, VASCERN Days, and the ERN and HCP evaluation.
The meeting concluded with two clinical case discussions, providing an opportunity for the clinicians to share their knowledge and learn from each other. Overall, the MSA Spring Meeting was a great success, providing an excellent platform for experts to share their knowledge and collaborate on different initiatives. The discussions held during the meeting were insightful and thought-provoking, highlighting the importance of continued work and collaboration to advance the field of rare diseases.