Arlyss
Well-known member
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
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