Lisa Salberg
12-02-2005, 12:44 PM
Hello everyone!
Well this AHA survey really got things moving over here. I wish I could share all the details with you at this moment - but I can not and for good reason. The HCMA has made a bold move that will not only have meaning for our little group but it will work to change the "big picture".
The HCMA has submitted the findings of this survey to the Heart Rhythm Society to be presented as an abstract at the May 2005 meeting. If this is accepted it will be a first for a patient advocacy organization to present findings in this manner at HRS. It will also enter this data into the body of medical literature. With this data entered into the body of literature it is a first step in shining a light on the problems we face as patients with HCM dealing with the medical community who lack awareness and appreciation for the treatment of our condition.
As the data has been submitted for presentation it is not appropriate for me to publish the findings at this time. What I can share is the fact that this was an eye opener- even for me - and that Cardiologists and other allied professionals lack an appropriate level of awareness of prevalence, screening and risk factors related to HCM.
We will also be conducting this survey at ACC in March and at HRS in May - we hope to take all the data and write a paper for publication in a the medical literature.
Sincerely,
Lisa
Well this AHA survey really got things moving over here. I wish I could share all the details with you at this moment - but I can not and for good reason. The HCMA has made a bold move that will not only have meaning for our little group but it will work to change the "big picture".
The HCMA has submitted the findings of this survey to the Heart Rhythm Society to be presented as an abstract at the May 2005 meeting. If this is accepted it will be a first for a patient advocacy organization to present findings in this manner at HRS. It will also enter this data into the body of medical literature. With this data entered into the body of literature it is a first step in shining a light on the problems we face as patients with HCM dealing with the medical community who lack awareness and appreciation for the treatment of our condition.
As the data has been submitted for presentation it is not appropriate for me to publish the findings at this time. What I can share is the fact that this was an eye opener- even for me - and that Cardiologists and other allied professionals lack an appropriate level of awareness of prevalence, screening and risk factors related to HCM.
We will also be conducting this survey at ACC in March and at HRS in May - we hope to take all the data and write a paper for publication in a the medical literature.
Sincerely,
Lisa