Question - Aortic Dissection
Survey for Anyone with type B dissection - or Type B and Type A Aortic dissection
Type B aortic dissection (TBAD) is a life-threatening condition that occurs when a tear in the descending thoracic aortic wall occurs creating a second false channel. 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 TBAD Collaborative is currently gathering perspectives of those affected by type B aortic dissection (also type B and type A) and they need your help!
The project team for The TBAD Collaborative seeks to build a formal infrastructure for a TBAD stakeholder community (patients with TBAD, clinicians, and researchers) to advise research teams on the questions that are most important to patients with TBAD. This award provides an opportunity to build stakeholder partnerships and grow them to include the organizations involved in research (IRAD, GenTAC Alliance, MAC consortium) while building a governance infrastructure and creating an outreach plan to engage patients with TBAD as research partners. The team will follow the principles of reciprocal relations, co-learning, trust, and transparency promoted by PCORI to engage its patient partners. The team will evaluate the preexisting research knowledge and willingness of patient partners to participate in healthcare research, and to ascertain research priorities from the stakeholder’s perspective and translate these priorities to patient-centered outcomes (PCOR) and comparative clinical effectiveness (CER) TBAD research.
The TBAD Collaborative want to hear from people for every contry in the World who have been diagnosed with type B aortic dissection (or Type B and Type A).
Take the survey and share your experiences.with aortic dissection. The survey responses will help understand what the community needs in terms of research, education, and support in dealing with type B aortic dissection.
Read more about the project, run by The University of Washington, USA, department of Vascular Surgery, in the lead of Professor Sherene Shalhub, financed by PCORI here:
https://www.becertain.org/partnerships/tbad-collaborative
25-30 minutes. This is the time it takes for a patient with Aortic Dissection type B (TBAD) to participate in the Type B Aortic Dissection Survey for patients from any country in the World, who survived Type B dissection. (You can also have been diagnosed with BOTH type A and type B dissections).
Find the survey here:
https://www.becertain.org/partnerships/tbad-collaborative
The survey will help medical doctors and researchers understand more about how we, the patients, experience an aortic dissection, and life and experiences having survived an type B dissection.
The summary of this survey will later be known all over the planet. (all answers are confidential - but the summary will be used to create awareness for surgeons, cardiologists, physicians all over the world)
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