November 3, 2009
Great news!!! Dr. Hayes would like to review an initial group of spontaneous coronary artery dissection (SCAD) records for purposes of developing the research protocol. She’d like about 10 of our files for starters, and has outlined specific guidelines of what records we need to collect.
Until a formal study with administrative staff exists, I’ll be your contact for collecting and sending the records to Dr. Hayes. Please e-mail me at katherine@fsirenovations.com. I’ll send you the guidelines and my address for mailing the documents/CDs/etc. It’ll be “first come, first served,” so please reply as soon as possible and we can get rolling. I’ll keep posting on the message board to make sure everyone is aware that the initial stage has begun.
Dr. Hayes wanted me to assure you that your records will be “confidential and de-identified” (just as they would be in the formal study). She also stressed that “research takes time, sometimes a frustrating amount,” and although there is no guarantee of what will result, she “will do [her] darnedest trying.” Also, as you know, legally and ethically, she cannot give individual/specific medical advice.
So … here we go! I look forward to your emails!
Katherine
October 28, 2009
Hi all. I've been exchanging e-mails with Dr. Hayes, and here's an update of the latest:
- In addition to reviewing the summary of our SCAD experiences, Dr. Hayes has done a literature review and is evaluating options for a research initiative.
- She plans to develop an educational component (such as a review article) to add our information into the existing literature on SCAD.
- Any research protocol would go before an internal review board at Mayo for approval.
- As things progress, each of us will likely need to send our medical records/imaging studies to substantiate our SCAD diagnosis (not for second opinions or clinical suggestions).
So in a nutshell, we are in great hands and this will be a lengthy, but worthwhile process. I appreciate everyone's interest and patience. For me, personally, this has been six years in the making. However long it takes, I'm ready to ride it out. I hope you are too!
Dr. Hayes said to stay tuned … I'll keep you posted.
Katherine
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SCAD research UPDATE
- By KAKLeon
- Posted October 28, 2009 at 10:00 pm · 7 replies
- In My heart disease - diagnosis and symptoms
- Shared with the public
- Edited November 12, 2009 at 8:13 am
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- By laurahc
- Posted November 7, 2009 at 8:34 am
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I've sent in for all of my records, now I'm just waiting for the fat envelope from the hospital medical records dept. to land on my doorstep. :)
-Laura
- By KAKLeon
- Posted November 9, 2009 at 11:44 am
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That's great Laura. Will look forward to the day that fat envelope thumps on MY doorstep!
Katherine
- By purpletopaz
- Posted November 13, 2009 at 4:20 am
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Hi, I am very intrested as to the information from this study, i had SCAD of the LAD nearly 4 years ago resulting in CAB, So it would be great to be updated on the finds etc from the study. I am glad someone is doing a study on this as my cardiologist had only ever seen 1 previous SCAD in over 30 years. I do believe awareness needs to be raised. I wish her luck!
- By KAKLeon
- Posted November 13, 2009 at 9:08 am
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Hi Nicola! Glad to see your post. We traded some messages in the past ... I hope all is well with you and yours.
It would be great to include you in the study. I checked with Dr. Hayes on behalf of another woman in the UK, and your records can be converted here in the U.S. at Mayo Clinic.
Right now she is reviewing a sampling to develop the research study. If you'd like to participate, please email me at katherine@fsirenovations.com.
The research will only happen if we on this board participate -- since we're the only group of SCAD survivors in the world! Amazing.
Must run for now ...
Katherine
- By daisy29
- Posted November 13, 2009 at 11:22 am
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Katherine,
I see my cardiologist on Mon. for a 3 month echo since my bypass. I will ask him about getting my medical records. I would love to send them to you for this study.
Hannah
- By KAKLeon
- Posted November 13, 2009 at 2:43 pm
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Hi Hannah ... sounds great! I just sent you the guidelines in a message, but if it's too hard to read, I can resend via email.
Thanks so much! Have a great weekend.
Katherine
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