“A new collaborative is being launched that aims to engage patients with type B aortic dissections (TBAD) as partners in patient-centered outcomes research. This work is funded by a Patient Centered Outcomes Research Institute (PCORI) award.
As you may know, patients with TBAD face dramatically different options for care without strong evidence for the long-term consequences of those options at an individual level. What is absent in the decision-making process in this complex landscape is the patient’s voice. Providing opportunities for patient involvement will help ensure the patient voice is well represented in research related to TBAD.
The next step in the project is an exciting one—and it is where you can help!
The TBAD Collaborative is launching a patient survey for the Type B aortic dissection community. It is a confidential survey meant for patients with a diagnosis of TBAD. The goal of the survey is to get a better understanding of the TBAD community and the needs of people with TBAD. From there, the research team will determine the next steps in terms of what are the most important research items to pursue next in Type B aortic dissection.
You can help make this a success by participating in the survey yourself and by sharing it with other members of the aortic dissection community. Share the link with other patients you know and on message boards such as Facebook. The more people with Type B dissections who participate in the study, the more the researchers can learn! If you have any questions about the survey, please email TBADCollab@uw.edu. We look forward to pushing TBAD research further, bringing our community closer together, and raising awareness about the important issue of aortic dissection.
Learn more and access the survey here: www.tbadcollaborative.org
Thank you in advance for helping to advance research.