For Patients and Research Participants

Current participants

Thank you for participating in SCAD research at Mayo Clinic. If your contact information changes, such as if you move, please call or email the study coordinator with your new contact information so that we can stay in touch.

New participants

To be eligible to participate in the studies, you or a close relative need to have a confirmed diagnosis of SCAD. The diagnosis should be based on an imaging test looking at the arteries that supply blood to the heart, such as an invasive coronary angiogram in the catheterization laboratory and in some patients, a computerized tomography coronary angiogram.

You also need to be 18 years old and able to give informed consent. You do not need to be a current or former Mayo Clinic patient to participate. Participants living outside the U.S. are welcome.

If you want to learn more about the SCAD Research Program's studies and whether you may be eligible, please read the Q&A. You also can contact the study coordinator.

With your consent, Mayo Clinic staff members will request a copy of your angiograms from your healthcare team to determine whether you qualify. If you are eligible, a staff member will contact you and provide more information about the research. The staff member also will ask you to sign an informed consent document.

Mayo Clinic has created a clinic to diagnose and treat people with SCAD. The SCAD Clinic sees about 10 to 15 new patients each month.

Following the Mayo Clinic Model of Care, clinical care in the SCAD Clinic and research about SCAD are complementary and integrated. Clinicians and researchers work together to better understand SCAD and its effects. Often, the people seeing patients at the SCAD Clinic are the same people leading the SCAD research studies.

For medical appointments at Mayo Clinic's campus in Rochester, Minnesota, please contact the patient appointment coordinator.

Expectations

If you sign up for SCAD research at Mayo Clinic, we will expect you to:

• Provide us with your medical records and relevant clinical and medical imaging data. You also can authorize us to request records from your regular healthcare team.
• Fill out a series of surveys about yourself. The surveys include questions about your age, gender, race or ethnicity, and other information about yourself. We also will ask about your current and past medical problems, reproductive history, psychosocial information, family history, and health status.
• Write an account of your SCAD story. These stories help researchers with important details about your experience with SCAD that may not be in the medical record.
• Give a sample, such as blood, for long-term storage and analysis. If you choose to participate in the DNA and plasma biobank, we will use this sample to analyze your genes.

Please send us copies of your records and keep your originals. If you send original materials or electronic media, please label them with your name, address and phone number so that we can return them to you.

Compensation

You will not be paid for taking part in SCAD research.

Cost

There is no cost to take part in Mayo Clinic's SCAD Research Program, including for storing information or samples.

Privacy

None of the samples you give to Mayo Clinic's SCAD Research Program are stored with your name, address, birth date, Mayo Clinic number (if applicable) or Social Security number on them.

Future requests

In the future, we may ask you to:

• Fill out more surveys to help us better understand how participants are doing.
• Give more blood samples.
• Let us know whether you want to know certain research results.
• Participate in other studies.

We appreciate updates on your medical status.

Research updates

As enrollment in Mayo Clinic's SCAD Research Program expands and research continues, we will update you in several ways:

• We provide research updates in scholarly publications and on our news page.
• We also are pioneering research communications via social media.
• If we need to contact you directly, we may call you, email you or mail you a letter.

For more information or to update your contact information, please contact the study coordinator.

Withdrawal

You have the right to leave the SCAD Research Program at any time. Please contact the program to talk about any concerns and the options you have for withdrawal.