As our subscribers saw in our recent post, the University of Washington is hosting a meeting of the vEDS Collaborative on July 27, 2018. For those registered to participate via video or phone, we wanted to share a brief post to let you know what to expect. For those who are unfamiliar with the meeting, or want to register to listen in, please visit our 2018 vEDS Collaborative Meeting Page for more details.
Introducing the vEDS Collaborative and its Mission
In 2017, researchers at the University of Washington (with participation from FIGHT vEDS) applied for a research grant through Patient-Centered Outcomes Research Institute (“PCORI”) and were awarded $50,000. The grant was awarded for a set of goals, including:
To gather stakeholders in the vEDS community (i.e., patients, patient organizations, researchers, and physicians). The vEDS Collaborative was developed to achieve this goal and will host meetings like this one to bring together the vEDS community – including individual patients and family members like many FIGHT vEDS subscribers.
The second goal of the PCORI grant is to identify and prioritize research topics that matter to the vEDS community. The upcoming meeting will also help to generate these patient-driven research priorities.
The July 27th meeting will help fulfill these goals and demonstrate to PCORI that the vascular Ehlers-Danlos community is well-coordinated. Additionally, the event will feature several educational sessions by leading experts that the entire vEDS community is welcome to listen in to!
vEDS Collaborative 2018 Meeting Agenda
The educational sessions will be open to listeners and viewers on the phone and online. Participants are invited to join any sessions that they are interested in:
8:00 – 8:30am (PDT): Introduction to the Day
8:30 – 9:00am (PDT): vEDS, Mental Health & Quality of Life Issues
10:15 – 11:00am (PDT): Finding a Medical Home & Creating a Care Team
1:00 – 2:00pm (PDT): A Holistic Approach to vEDS Management
3:15 – 3:45pm (PDT): Pregnancy and vEDS
Three Ways to be Involved
Watch: Tune in for any of the educational sessions listed above
Share your voice: In the week leading up to the event and during the meeting itself, think of what vEDS research is most important to you. Submit your ideas in the live Q&A in the webinar portal on the day of the event.
Spread the word: Tell other members of the vEDS Community about the event so that they too can participate by sharing this link: the vEDS Collaborative.
I Am Not a Healthcare Professional—Can I Still Make Research Questions?
Yes! The research questions we are creating at the vEDS Collaborative Meeting are meant to be those that are the most important to vEDS patients. Whether you are a patient, family member, or friend—your voice counts! Examples of research questions would be:
Comparative Effectiveness Questions: These questions directly compare two things on a particular outcome.
Example 1: Is Drug A more effective in vascular EDS than Drug B to lower blood pressure?
Example 2: After a surgery, does a lower amount of IV fluids decrease the number of arterial dissections in the hospital post-surgery?
Patient-Centered Outcomes Research Questions: These focus on a patient’s beliefs, preferences and needs. Anything that’s important to you could be the foundation of a good study.
Example: Does having a local vascular EDS support group increase a patient’s quality of life?
The 2018 vEDS Collaborative Meeting will be a great way to learn about vEDS and let your voice be heard. If you aren’t already subscribed to FIGHT vEDS, be sure to subscribe for updates on this event and others in vascular Ehlers-Danlos Syndrome.