For Participants

Spontaneous coronary artery dissection (SCAD) studies at Mayo Clinic

Mayo Clinic is currently conducting two ongoing clinical trials for SCAD patients.

Current participants

Thank you for participating in SCAD research at Mayo Clinic. If you move, please call or email our 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, which is done through a 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 United States are welcome.

If you are interested in learning more about the studies and whether you may be eligible, please read the questions and answers. You may also contact our study coordinator.

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

For diagnosis and treatment, we have developed a multidisciplinary SCAD clinic as part of Mayo's Women's Heart Clinic. In part due to our research efforts, our team is currently seeing about 10 new SCAD patients each month. This is in contrast to our previous experience of less than 10 patients a year from 1993 to 2010. Following the Mayo Clinic Model of Care, our clinical practice and our research are not just complementary, but integrated; each area amplifies and informs the other.

For medical appointments at Mayo Clinic in Rochester, Minnesota, please contact our patient appointment coordinator.

Expectations

As a participant, you are expected to:

  • Provide Mayo Clinic staff with your medical records and relevant clinical and medical imaging data, or authorize staff to request records from your health care provider.
  • Fill out a series of questionnaires about your demographic information, current and past medical problems, reproductive history, psychosocial information, family history, and an assessment of your current health status.
  • Write an account of your SCAD story. Participant narratives provide researchers with important ancillary descriptions of the SCAD experience and insights that may not be found in the medical record.
  • Give a sample of blood for long-term storage and analysis, including genetic analysis (if you choose to participate in the DNA and plasma biobank).

We advise patients to send copies and retain their original records. If any original materials or electronic media are sent, please label them with your name, address and phone number so that we can return them.

Compensation

Participants are not compensated for taking part in SCAD research.

Cost

There is no cost to have your information, samples or both included in the Mayo Clinic SCAD Research Program.

Privacy

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

If a risk factor is identified in your sample, a federal law, the Genetic Information Nondiscrimination Act, makes it illegal for employers and health insurers to use certain kinds of information about your genes to discriminate against you.

Future requests

In the future, participants may be:

  • Occasionally asked to fill out additional questionnaires
  • Occasionally asked to give additional blood samples
  • Asked if they are interested in learning certain research results
  • Asked to participate in other studies

You will receive no more than two requests a year for additional information and samples or to participate in additional studies.

Participant communications

As enrollment in the Mayo Clinic SCAD Research Program expands and researchers continue to use samples and information from the registry and DNA and plasma biobank for research studies, we will communicate updates to all participants in several ways:

  • Updates are available regarding SCAD research projects, publications resulting from our research and news about SCAD research at Mayo Clinic.
  • The Mayo Clinic SCAD Research Program is also pioneering research communications via social media.
  • If direct contact with a participant is needed for any reason, the participant may receive a letter by mail or a phone call from Mayo Clinic staff.
  • For more information or to update your contact information, please contact our study coordinator.

Withdrawal

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