Saturday, August 13, 2016

NHLBI Strategic Ten Year Vision Includes Aortic Disease!

The anxiously anticipated final strategic vision research topics from the National Heart Lung and Blood Institute (NHLBI)have been announced.

Last year the Bicuspid Aortic Foundation participated in the invitation from the NHLBI for public input into strategic research topics for the next 10 years. Preliminary topics were announced previously. We have now been notified of the final decisions. 

The final version can be found at this link:

At the Bicuspid Aortic Foundation we are very pleased to see that two selections of particular importance to us remain in the final topics for research funding. Below, they are taken directly from the research section of the NHLBI strategic vision website:

Critical ChallengeIn patients with an aortic aneurysm, better tools are needed to determine which patient phenotypes and disease characteristics could best predict who would benefit from a repair. Examples of such tools include animal models that reflect human pathology and biomarkers/molecular imaging tools that are predictive of rupture or dissection.(4.CC.02)
Yes, this is a critical challenge. Sadly, at BAF we know of far too many examples of trauma and death associated with the thoracic aorta. Those who should have surgery before they dissected or ruptured.

Compelling QuestionWhat is the optimal clinical management approach for patients with severe calcific aortic stenosis but with minimal symptoms?(5.CQ.09)

This question must be answered, and it is within reach to do so. It is beyond description to lose the otherwise healthy who have BAV and diagnosed aortic valve disease. This topic speaks directly to what happened to Chuck Doherty. Chuck's family is not the only one we have met who have suffered sudden loss due to this. We would like to see aortic regurgitation addressed also, but this is a start!

Here is Chuck's story:  

In both of these areas, the aortic valve and the aorta, there is treatment available today. It is beyond tragic when that treatment is not offered in time. Those who are granted the privilege of funding to do this research will receive a great trust, to positively impact the timing of elective treatment and prevent untimely injury, suffering, and death. 

At the Bicuspid Aortic Foundation, we will be very interested to see where the research funding is granted and will continue to advocate for meaningful research and treatment options for those with BAV and other "nameless" forms of aortic disease in the chest. 

Together, we continue
 to keep the spotlight
on aortic disease in the chest,
Creating a Climate of Hope.

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