Where: Virtual
When: February 12, 2021, 12PM-1PM EST
In this webinar, Dr. Siddharth Prakash (UTHealth) will introduce the cloud sharing platform, Trice, and explain how users can leverage Trice to exchange images, and conduct collaborative projects more quickly and easily across the GenTAC Alliance.
Where: Virtual
When: February 25, 2021, 12PM-1PM EST
In this webinar, Dr. Hal Dietz will discuss the impact of genetic background on the vascular phenotype in mouse models of Marfan syndrome and Vascular Ehlers-Danlos syndrome.
The DEFY Foundation invites you to participate in the 4th Scientific Meeting on Vascular Ehlers-Danlos syndrome. The one-day virtual meeting will be held on Friday, April 9, 2021, from 10:00 am – 4:00 pm Eastern. Key areas of focus will be sharing knowledge in basic, translational and clinical aspects of Vascular Ehlers-Danlos syndrome with the goals of developing research directions for advancing therapeutic strategies, development and/or integration of pioneering concepts and theories and establishing collaborations. Abstract are due on February 19.
SUBMIT ABSTRACTS
Dr. Kim Eagle, chair of the GenTAC Alliance, will be joined by Dr. Enid Neptune, Johns Hopkins, and Dr. Josephine Grima, The Marfan Foundation, to present the latest research on covid-19 that is related to the community of people with genetic aortic disease. The webinar is on January 14, 2021, at 7 pm EST. Registration is free, but is required. All are welcome.
Register
Dr. Kim Eagle, chair of the GenTAC Alliance, and Dr. Josephine Grima, chief science officer of The Marfan Foundation, presented highlights of the GenTAC Aortic Summit 2020 at a webinar for the Marfan and related conditions community on November 19. The recording of the webinar is now available.
View
The GenTAC Alliance honored three giants in the field of aortic disease at the kick-off of the GenTAC Aortic Summit 2020 on October 8: H. Eser Tolunay, PhD, Patrice Desvigne-Nickens, MD, and Reed Pyeritz, MD, PhD.
GenTAC Alliance Honors Desvigne-Nickens, Pyeritz, and Tolunay
Registration is now open for the GenTAC Aortic Summit 2020, one of the premier meetings in the world focused on sharing knowledge and advancing research on genetic aortic disease. It is open to scientists, clinicians, institutions, organizations, and the general public interested in genetic aortic conditions. This year’s event will be virtual, with presentations on-demand beginning September 29 and live discussions on October 8 and 10.
Click to view full announcement
Dr. Siddharth Prakash (Chair, Biospecimens and Data Working Group) hosted a webinar to explain Trice Imaging, a cloud-based platform that allows physicians to securely upload and share images/videos on collaborative research projects. Dr. Prakash described potential applications for GenTAC members as well as hosted a Q&A session. Click below to view.
This new collaborative 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) Eugene Washington Engagement 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 TBAD Collective 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 what our needs are. From there, the team will determine the most important research items to pursue next in Type B aortic dissection.
The more patients we have participate in the study, the more the Collective will learn! 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
Click the link below to read the first newsletter of 2020 from the John Ritter Research Program and learn more about recent updates in aortic and vascular disease research and how to get involved!
JRRP January 2020 newsletter.pdf
We’re pleased to announce GenTAC Alliance Clinical Science Working Group Vice Chair, Sherene Shalhub’s receipt of two research awards.
Eugene Washington PCORI Engagement Award: Engaging Patients with Type B Aortic Dissections as Partners in Patient-Centered Outcomes Research.
With this two-year, $250,000 award, Dr. Shalhub is studying patients with type B aortic dissection (TBAD) who face complex decisions with regards to the management of their aortic dissection. The objective of this initiative is to build a collaborative aortic dissection research infrastructure that will facilitate patient centered outcomes research training, support, and networking among patients with TBAD, surgeons, cardiologists, researchers, industry stakeholders, and patient advocacy groups. The main outcome of this work is to assemble a broad network of patients with TBAD and stakeholders, who are well informed and who will guide the research prioritization in TBAD research.
Dr. Shalhub and her collaborators anticipate that as they work together, they will identify findings that are relevant to daily clinical practice and can be immediately adapted for wide dissemination and will identify TBAD related knowledge gaps that would benefit from patient centered outcomes research and comparative effectiveness research. Creation of the community will also allow us to evaluate patients’ willingness to participate in future randomized TBAD related research studies which are very much needed for this disease process.
The award time: 8/1/2019-7/31/2021
Vascular Ehlers-Danlos Syndrome Patient-Centered Research Conference award.
This is a one year $50,000 Eugene Washington PCORI Engagement Award that builds on the successful work of creating the Vascular Ehlers-Danlos Syndrome collaborative which was funded by the PCORI Tier A Pipeline to Proposal award in October 2017. The goal is to bring a much larger stakeholder group together (patients, advocacy organizations members, physicians, researchers, and industry) and review the questions feasibility to create feasible patient centered outcomes research (PCOR) and comparative effectives research (CER) projects eligible for funding.
This award time is 2/4/2019-2/3/2020
Website: https://www.vedscollaborative.org/
New review by Marion A. Hofmann Bowman, MD, PhD; Kim A. Eagle, MD; Dianna M. Milewicz, MD, PhD on the the results of clinical trials using β-blocker, losartan potassium, and irbesartan in patients with Marfan syndrome and comments briefly on mechanisms of aortic remodeling, including fibrosis and transforming growth factor β signaling.
Update on Clinical Trials JAMA Journal 5/9/19
Check out Dr. Kim Eagle’s presentation at American College of Cardiology Annual Scientific Sessions 2019 titled, “Acute Aortic Dissection: Lesson Learned from 9000 Patients Presentation. Dr. Eagle outlines how approaches to diagnosis, treatment, and outcomes of acute aortic dissection have changed over the last 25 years. He reflects on what we have learned and where we need to go in the next 25 years.
Lessons Learned from 9000 Patients Presentation