Authors: Diana Aguiar de Sousa and Jonathan Coutinho

Twitter: @Diana_A_Sousa @Jonatha88386639

The International 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 invited 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.

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.

ESOC is Europe’s leading forum for advances in research and clinical care of patients with cerebrovascular diseases. ESOC 2024 will live up to its expectation, and present to you a packed, high quality scientific programme including major clinical trials, state-of-the-art seminars, educational workshops, scientific communications of the latest research, and debates about current controversies. Learn more here.