For Participants

Current participants

Thank you for participating in SCAD research at Mayo Clinic. If you change your contact information, including relocation, please call or email the study coordinator with your new contact information so that the program 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 the study coordinator.

With your consent, Mayo Clinic staff members 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, Mayo Clinic has developed the multidisciplinary SCAD Clinic. In part due to research efforts, the SCAD Clinic team is currently seeing about 10 to 15 patients with SCAD each month. This is in contrast to the clinic's previous experience of less than 10 patients a year from 1993 to 2010.

Following the Mayo Clinic Model of Care, clinical practice and research are not just complementary, but integrated; each area amplifies and informs the other.

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

Expectations

As a participant, you are expected to:

• Provide Mayo Clinic staff members with your medical records and relevant clinical and medical imaging data, or authorize the 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).

The SCAD research team advises patients to send copies and retain their original records. If you send any original materials or electronic media, please label them with your name, address and phone number so that the team 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 Mayo Clinic's SCAD Research Program.

Privacy

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

If a risk factor is identified in your sample, a federal law called 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 to gain insight on how participants are doing
• Occasionally asked to give additional blood samples
• Asked if they are interested in learning certain research results
• Asked to participate in other studies

The SCAD research team appreciates updates on your medical status.

Participant communications

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

• Updates are available regarding SCAD research projects, publications resulting from the research and news about SCAD research at Mayo Clinic.
• Mayo's 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 the study coordinator.

Withdrawal

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