NIH Sponsoring Registry for Thoracic Aortic Disease, Including BAV

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Arlyss

Well-known member
Joined
Nov 7, 2002
Messages
447
Location
southern California
The National Institute of Health is creating a registry for those with thoracic aortic disease. Included are those with bicuspid aortic valves.

Here is the home page of the website.

https://gentac.rti.org/Default.aspx?tabid=36

Here is the eligibility page

https://gentac.rti.org/Default.aspx?tabid=93

On the website it lists the centers that are part of this work. In addition, I have been told that they are now expanding beyond these centers. Patients can contact them directly, without needing to go through these medical centers.

The geneticist leading this work in Oregon, Dr. Cheryl Maslen, will be attending the Bicuspid Aortic Foundation's Conference in July in Los Angeles.

http://www.ohsu.edu/ohsuedu/academic/som/dean/discovery-spotlight-maslen.cfm

That will be an opportunity for anyone in southern California who is interested in learning more about this reseach.

Best wishes,
Arlyss
 
When I had my cath prior to surgery 2 years ago I was asked if I would particpate in a genetic research program. They took blood samples for it. I believe if I remember correctly they said that it was based in Canada. I was willing to participate as I always figure what they have learned from me over the years is good for the next guy that they find out has these problems.
 
Thank you, Arlyss. Excellent information and news.

OHSU is right up the interstate from me and I am emailing to see if they are interested in BAV without aneurysm.

Marguerite
 
I got a clarification on enrollment from Kira Lurman at Johns Hopkins:

"We are enrolling people who have or had Bicuspid Aortic Valves who have either a family history of BAV or have or had dilation of their thorasic aorta"

So, if you're like me and all you have (or had) is BAV without dilation of thorasic aorta, and there is no family history of either, then they're not interested in you.

But there must be many members of valvereplacement.com who qualify.

However, there does not seem to be much indication that they are going to expand beyond the five centers listed in the enrollment section. It was indicated to me by Tabitha Hendershaw of RTI that in some cases they were allowing persons to be registered by mail, but that it was preferred that they get enrolled at one of the enrollment centers.
 
I have a BAV, with a family history of BAV (my brother, who also had an aortic aneurysm). Do you guys think I should apply to be a participant?

Wise
 
There is a member here who has or had a bicuspid valve (though I can't recall who it is) whose identical twin does not have a bicuspid. That is fascinating and I would think worthy of study also.
 
Wise, yes, I think if you're eligible and its not an undue effort you ought to see if you can enroll. The goal of the Gentac study is stated on their website, https://gentac.rti.org/

"The information collected through the registry will help doctors and researchers better understand the link between genes and aortic aneurysms and heart disease. GenTAC will also enable research to determine the best ways to manage the complications of cardiovascular disease that can arise from some genetic disorders. Better understanding and more research will lead to better treatment."

However, with five centers it will probably be difficult for most to physically get to an enrollment center. If one is not near you I'd advise contacting the RTI Data Coordination Center at 1-800-334-8571, extension 24640, or email them at [email protected] Make sure you inquire about enrolling by email/mail if none of the five centers are convenient for you to get to.

I would hope that the study will benefit all of us here at valvereplacement.com
 

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