CVT Summit 2023

The international scientific meeting on cerebral venous thrombosis (CVT Summit 2023) was initiated by the International Cerebral Venous Thrombosis Consortium and took place in the Room Mate Aitana hotel in Amsterdam on 1 and 2 June 2023. The aims of the meeting were to define an international research agenda for cerebral venous thrombosis (CVT) and to strengthen global collaboration in this field. We welcomed 45 participants from 15 countries, among whom 35 clinical researchers, four patient representatives, three industry representatives, and two representatives from non-profit granting organizations.

Six pre-specified themes were discussed during the summit: 1. Epidemiology and clinical features, 2. Life after CVT, 3. Neuroimaging and diagnosis, 4. Pathophysiology, 5. Treatment – medication, and 6. Treatment – endovascular. All themes were introduced by a speaker who presented the respective current state of knowledge, summarized ongoing research activities and proposed topics for future research. After this presentation, the meeting participants, led by four selected panel members, provided their first thoughts and ideas on the proposed research directions. The meeting participants were then split in break-out sessions, where they further discussed the theme and listed concrete research questions in order of importance. These concrete research questions were discussed again with the whole group in a second plenary discussion, after which the research questions were finalized. This resulted in 3 to 4 research questions per theme which the group of participants agreed upon should be the focus of research in the coming years. These questions are currently being bundled in a position paper with a research agenda, which we plan to finalize within the coming weeks and submit for publication to an international medical journal. We envision that researchers worldwide will use this position paper to: 1. Prioritize which research questions require answering; 2. Increase the quality of research; 3. Strengthen international collaboration; 4. Help to secure national and international funding for research on CVT.

An important part of the meeting was formed by the presentations by the patients’ representatives. Two women from different countries who had suffered a CVT in the past shared their impressive story on how CVT affected their lives and shared their view on priorities for future research directions for CVT.* Both patients have extensive networks among CVT patients in their countries, allowing them to speak on behalf of a large group of CVT survivors. The meeting program also included talks about the European Stroke Organisation and American Heart and American Stroke Association guidelines on CVT and education on behalf of the World Stroke Academy, which all contributed to a comprehensive overview of the current position of CVT research.  

*Quote from Elisheva Boumans, one of the patients' representatives: ‘Today and tomorrow you will discuss the latest research on CVT and what needs to be analyzed in the future for better patient outcome. You will talk about trials and such. And every time you do, keep in mind my story, and remember that behind every number in a clinical trial lies a story full of pain, fear, anxiety, and above all questions: how come and how to deal with long-term consequences such as fatigue, lower energy levels, and overstimulation; things you can’t see but they are always there.

Besides research, education is key. For instance think about GPs, ER personel, neurologists, internists etcetera. It’s a fact that CVT effects mostly women and over the years I came across many women whose story wasn’t taken seriously during visits to their GP or ER. Often they were told: too much stress or it might be a migraine or worse, it is all in your head. Yeah sure, it is indeed a problem in the head and it is about time we take women seriously in medicine and listen to them’. 

The CVT summit was fully funded by the following non-profit organizations: European Joint Programme on Rare Diseases (EJP RD), ZonMw, Amsterdam Neuroscience, Dr. C.J. Vaillantfonds, Dutch Brain Foundation, Dutch Thrombosis Foundation, Dutch Heart Foundation. No profit organization was involved in the design or funding of the summit.

This meeting is endorsed by the European Stroke Organisation and the World Stroke Organization. It was open to all who were interested in cerebrovascular diseases.

For more information about the European Stroke Organisation, please visit their website: http://www.eso-stroke.org/ or the website of the next ESO Conference: https://eso-stroke.org/esoc2024.