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