Mayo Clinic SCAD Research

Hi everyone. Just reposting the research information for easy access to those new to WomenHeart.

If you've been diagnosed with Spontaneous Coronary Artery Dissection (SCAD), please consider contacting Mayo Clinic at the number below to participate in this very important research study.

Here is general information about the SCAD study:

The link to the Mayo SCAD study page is: http://newsblog.mayoclinic.org/2011/08/17/scad-spontaneous-coronary-artery- dissection-studies-at-mayo-clinic/

Contact the study coordinator, Jill, to apply at (507) 266-3180. (Writing your story on the blog does not register you with the study coordinator; please call (507) 266-3180 or fax your contact information to (507) 284-5907.)

An alternate way to access the research information is through this link, which shows both clinical trials:
http://www.mayoclinic.org/spontaneous-coronary-artery-dissection/clintrials .html

Updates from Mayo are posted here:
http://www.facebook.com/pages/SCAD-at-Mayo-Clinic-Spontaneous-Coronary-Arte ry-Dissection/440175972694809

Then, just a reminder, it is time to relax and wait. Research is a long process, particularly in our case where Mayo is essentially doing the study out of the goodness of their hearts, adding all of us on top of their daily workload.

Everything that has to be done to communicate with us, register us, collect records, review them when they arrive ... EVERYTHING is being done on top of what they do in their "real" jobs as Mayo administrators, cardiologists and physicians.

A good rule of thumb is if you've left a message or email, give it two weeks before following up. Once your providers have confirmed your records and imaging were sent to Mayo (and consider time for transit to Minnesota and getting through Mayo's internal mail system), give it another two weeks for Jill to contact you. As for the angiogram review, that is where it could be many weeks or many months. Each angio must be reviewed to confirm the diagnosis of SCAD. Angios are reviewed whenever the doctor isn't busy taking care of his own patients.

After the review of your angio confirms SCAD, you will be sent a packet of study questionnaires to complete and return to Mayo. These questionnaires and the records review provide the data that includes you in the virtual registry.

Even though it seems like you are waiting forever, please expand your thinking to months instead of days and weeks for turnaround. Take comfort in the fact that something is being done!! Mayo Clinic is awesome, and we are very fortunate they've taken up our cause.

Thanks for joining in the research effort!
Katherine

Edited October 13, 2012 at 9:53 am