Aortic Dissection Collaborative patient research - Webinar
Our patient charity is part of the Aortic Dissection Collaborative - an international group launching new activities to improve healthcare and research for aortic dissection. Join us for this webinar.
Event Details
The Aortic Dissection Collaborative is launching new activities to improve health care and research for aortic dissection. We need people like you - people who have or are at risk for aortic dissection and family members and care partners of people who have or are at risk for aortic dissection - to help us ensure a more patient-centered future for aortic dissection research and health care.
A group of researchers at Imperial College London in the UK are developing the first ever patient-reported outcomes tool specific to aortic dissection, and the Aortic Dissection Collaborative is partnering with them to make sure that patients' and family members' voices are heard so that the final tool is as relevant and useful as possible for future health care and research.
Join us on Monday, November 20th at 5:30pm, for a one-hour session where the team from Imperial College London will share their plans for developing this aortic dissection-specific tool. You'll learn more about patient-reported outcome tools and why they're important to patient-centered health care and research. You'll also learn about how you can be involved in this work, making your voice heard, as the Imperial College London team continues to work on creating the aortic dissection patient-reported outcome tool.
What is a Patient-Reported Outcome Measure?
Patient-reported outcome tools or measures, also called PROs or PROMs, are tools that allow patients to share information about how certain aspects of their health are affecting their quality of life. PROs can be general or specific to a particular condition. PROs are used in both health care, to help doctors and patients manage diseases or conditions, and in research, to help investigators understand the impacts of a treatment being studied. PROs are extremely important, because they provide a window into patients' quality of life and daily activities that other standard ways of understanding the effectiveness of a healthcare treatment do not.
As new PROs are being developed, it's really important that patients' voices are heard in the process, so that the teams developing the new tools are including the topics and issues that are most important to patients!