In 2003, I survived a spontaneous coronary artery dissection (SCAD), heart attack, and double bypass surgery after the birth of my second son. For the next several years, I scoured the Internet to find other survivors. My goal was to generate formal scientific research of this condition, also known as SCAD. Through the WomenHeart online support community, hosted by Inspire, I was able to compile the basic information of 86 women. I took this “data” to Mayo Clinic and was fortunate enough to connect with Dr. Sharonne Hayes. She adopted my cause as her own, and with the help of Dr. Marysia Tweet, two research studies are under way.
The first study will create a “virtual registry” of more than 200 SCAD patients. The second is a DNA biobank for up to 400 SCAD survivors, their relatives, and the families of those who died from SCAD.
As a rare and hardly researched condition, SCAD is now being explored in a manner that will yield information to guide accurate (and timely) diagnosis, treatment protocols, and possibly, screening. As with all research, the potential benefits to men and women cardiac patients are unlimited.
I am thrilled to continue this journey!
Katherine Leon
Hi Katherine, I loved your video idea for doctor visits! That’s thinking out of the box. I thought you might like to know about a new innovation using audio to capture what the doctor has told us to do when we see him/her. The innovation is called YourDoctorsAdvice. My organization, the Cautious Patient Foundation, wrote the source code for this program, we are testing it at the University of Texas Medical Branch in Galveston, TX, and will provide the source code for free to any healthcare system or hospital that would like to include it in their electronic “tools.”
Thank you for your comment, Bill. Your innovation sounds like a wonderful aid to patients. I’ll look for news about the U. Texas results!
K
Hi Katherine
I had my first SCAD on April 9th. Fortunately a mild attack, I’ve been discharged from hospital already without stenting, feeling near-normal. I’m British, 45, male, white/caucasian, fit and a keen road cyclist.
I’m keen to learn more about this condition and to be involved in and to benefit from the work of the Mayo Clinic. Their website seems poorly managed/unreliable (it’s offline as I type, for instance) and to lack content such as details and results of the study so far, for example. I’m therefore reluctant to assume that’s the only route to finding out more so would like to ask your advice on how best to get up to speed.
FYI, I emailed MayoSCAD@mayo.edu on Friday and am waiting for a reply.
With my thanks for your initiative and energy in this area and my best wishes for good health.
Peter Hardisty
Hello Peter. Thank you for your comment. Although I’m sorry to hear about your recent SCAD, it is great news that you are feeling well and didn’t require intervention.
As you are new to SCAD, I understand why it may seem that there should be “more out there,” but for reliable information and research, Mayo Clinic is the answer. One year ago, you would have found practically no information when you Googled. There are journal articles on the Internet that review a few cases at a time, but the information is not particularly accurate. The Mayo SCAD registry and DNA biobank is the first single-center, large case series prospective research undertaken.
In the months since Mayo announced the studies September 2011, more than 300 patients have inquired. That is amazing – considering patients are finding the studies, not the other way around. The original goal was 200. Medical records, including imaging, for each person must be retrieved to confirm SCAD before the applicant is enrolled in the research and receives the study materials. An undertaking on this scale, takes months per applicant, so I’m not surprised that you haven’t had a reply to your email yet. Also, bear in mind that the Mayo personnel are managing the research in addition to their “day jobs” of taking care of patients in Rochester, MN. The research team has a very organized process in place and you will definitely receive a response; it just takes time.
I am not clear about your comment that the Mayo website is “offline.” Did you try either of these links?
http://www.mayoclinic.org/spontaneous-coronary-artery-dissection/clintrials.html
http://newsblog.mayoclinic.org/2011/08/17/scad-spontaneous-coronary-artery-dissection-studies-at-mayo-clinic/
If you call the phone number in the second link, you will reach the study coordinator.
I’m very glad that you posted. Although it is frustrating to not have answers, at least we have hope because something IS being done now. With a 300+ applicant pool and DNA biobank, Mayo is certain to reveal clues to the mystery of SCAD.
Best regards,
Katherine