Harnessing Twitter to empower scientific engagement and communication: the ISTH 2020 virtual congress experience

As a result of the coronavirus disease 2019 pandemic, the International Society on Thrombosis and Haemostasis (ISTH), like many societies around the world, canceled their in-person hematology congress planned for Milan, Italy, in July 2020. As a result, the first virtual ISTH congress in the organisation's 51-year history was delivered, inviting free registration from across the globe. As part of the social media support, marketing, and scientific dissemination efforts for the virtual congress, the ISTH assembled a group of official Twitter Ambassadors, which represented the broad and diverse ISTH community. Ambassadors were tasked to tweet daily throughout the congress and to share their commentary on the hematology research being presented with the "#ISTH2020" hashtag. Ambassadors were also supported by Twitter activities from the two official ISTH-affiliated journals: the Journal of Thrombosis and Haemostasis (JTH) and Research and Practice in Thrombosis and Haemostasis (RPTH). In this forum and through the Twitter ambassadors' lens, we present the Twitter Ambassadors' experience, reflect on the impact of social media on the ISTH 2020 congress, and share this experience with the wider scientific community. Specifically, we report on the role of Twitter communication for virtual meetings, discuss the pros and cons of the virtual congress, and offer Twitter-related recommendations for future virtual or blended congresses. We conclude that the ISTH Twitter Ambassador program broadened social media engagement and offers a novel route to improve social connectivity in the virtual research congress setting

Building the foundation for a community-generated national research blueprint for inherited bleeding disorders: research to advance the health of people with inherited bleeding disorders with the potential to menstruate

Background: People who have or had the potential to menstruate (PPM) with inherited bleeding disorders (BD) face particular challenges receiving appropriate diagnosis and care and participating in research. As part of an initiative to create a National Research Blueprint for future decades of research, the National Hemophilia Foundation (NHF) and American Thrombosis and Hemostasis Network conducted extensive all-stakeholder consultations to identify the priorities of PPM with inherited BDs and those who care for them. Research design and methods: Working group (WG) 4 of the NHF State of the Science Research Summit distilled community-identified priorities for PPM with inherited BDs into concrete research questions and scored their feasibility, impact, and risk. Results: WG4 identified important gaps in the foundational knowledge upon which to base optimal diagnosis and care for PPM with inherited BDs. They defined 44 top-priority research questions concerning lifespan sex biology, pregnancy and the post-partum context, uterine physiology and bleeding, bone and joint health, health care delivery, and patient-reported outcomes and quality-of-life. Conclusions: The needs of PPM will best be advanced with research designed across the spectrum of sex and gender biology, with methodologies and outcome measures tailored to this population, involving them throughout.</p

von Willebrand disease: proposing definitions for future research

von Willebrand disease (VWD) is a common bleeding disorder, which affects 1 in 100 individuals based on laboratory testing and at least 1 in 1000 individuals based on presence of abnormal bleeding symptoms.1,2 VWD was first described almost 100 years ago, and since the initial report, major advances in both diagnostic testing and treatment options have improved outcomes for patients living with VWD; however, many patients still experience significant complications and barriers to treatment. An underlying problem is the lack of consistent unified definitions. In recent work developing evidence-based guidelines for VWD,3,4 it was noted that studies on VWD often used varying definitions. For example, studies of von Willebrand factor (VWF) concentrates did not have consistent definitions for major bleeding, studies on VWF prophylaxis did not use consistent definitions of what constituted a prophylaxis regimen, and studies on desmopressin did not use consistent definitions of desmopressin responsiveness. In addition, common bleeding conditions, such as heavy menstrual bleeding (HMB) and postpartum hemorrhage are variably defined. Such inconsistencies in describing study regimens and endpoints hinder the ability to compare study outcomes and to advance treatment of patients with VWD. We propose definitions for future use in VWD research to facilitate comparison of treatment options. These definitions are based on the most common usage in the literature and endeavor to encompass the most common situations in VWD. The proposed definitions were derived from existing literature and discussed at the first in-person meetings of the guideline panels. Group members made amendments, and the consensus document was circulated to the group. All authors approved the final document